Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

Messages
14
Likes
26
I am trying to get some clear information on this, so I want to make this question very specific. I am not talking about co-morbid conditions like mold sensitivity, multiple chemical sensitivity, migraines, MCAS, food intolerance, allergies, etc. If you have healed from those illnesses through brain retraining, that is wonderful but this thread is for only ME/CFS. I do not have any sensitivities, and I do not avoid any foods, chemicals, scents, etc., but I'd like to get a clearer picture of these therapies.

Has anyone who does NOT have sensitivities (except exertion, since this is the cardinal symptom of MECFS) experienced relief from DNRS or other neural retraining programs?

Please keep answers short and rate your Karnofsky Score (table below) BEFORE you did the program and your score AFTER.

Thanks!
 

Attachments

valentinelynx

Senior Member
Messages
1,031
Likes
2,730
Location
Tucson
I find it a bit peculiar that you are trying to separate out symptoms of allergies, chemical intolerance, and MCAS... These are integral to the illness in my experience. I had no allergies, and no unusual sensitivities prior to falling ill, and strong sensitivity to things like fragrances & VOCs, light and sound, as well as allergic reactions to many things in the environment started at the same time as my other symptoms, including exertion intolerance. Are there ME/CFS sufferers with no sensitivity to anything other than exertion?
 

Wishful

Senior Member
Messages
1,879
Likes
3,108
Are there ME/CFS sufferers with no sensitivity to anything other than exertion?
The allergies and sensitivities mbunke is talking about are things that are also common among people who don't have ME. ME might trigger or worsen some of these comorbid conditions, but they aren't an integral part of ME, at least for the majority of PWME. I have some airborne allergies that started before my ME, and haven't worsened with ME, so I don't consider them part of ME. I don't have greater sensitivities to light or sound or environmental chemicals. Some foods that I used to enjoy now worsen my ME, but I don't consider that to be a food sensitivity, but rather that those substances now alter pathways involved in ME severity. One example is peroxynitrite scavengers.

I think her question is valid. Successfully treating one comorbid symptom of ME isn't treating ME, which is what she's asking about: the fatigue/lethargy and PEM that is specific to ME.

So, to answer your question, I'd say that I don't have any sensitivities other than exertion or chemicals that directly affect the metabolic pathways involved in ME.
 
Messages
14
Likes
26
I find it a bit peculiar that you are trying to separate out symptoms of allergies, chemical intolerance, and MCAS... These are integral to the illness in my experience. I had no allergies, and no unusual sensitivities prior to falling ill, and strong sensitivity to things like fragrances & VOCs, light and sound, as well as allergic reactions to many things in the environment started at the same time as my other symptoms, including exertion intolerance. Are there ME/CFS sufferers with no sensitivity to anything other than exertion?
Yes, I definitely agree that most PwME become sensitive to things other than just exertion, but I don't have very many sensitivities except exertion, and I'm trying to find information on whether anyone has had success using neural retraining to treat symptoms like PEM and pain.

It sounds like people have used to it treat lots of the sensitivities they have developed as a result of their ME, and this helps them because these things then no longer trigger ME symptoms like malaise, but I'm wondering if it can help with the general pain, malaise, and neuro-cognitive impairment I experience on a daily basis without anything "triggering" it, it's just part of my existence. Does that make sense?


@mbunke
I guess you meant if limbic training/gupta stuff is working for exercise intolerance and PEM?

I've read once about a PwME who has tried it.for her it was pretty useless.


ME/CFS is not only exercise intolerance.
(see ICC or CCC for Me/cfs)
you need to meet more than one criteria for ME/CFS

Yes, this is what I mean, thanks for rephrasing it! It's kind of difficult to figure out how to phrase it. Yes basically, I mean any of the symptoms of ME that AREN'T triggered by something like a chemical, food, etc. The symptoms that just are there all the time, whether or not there's a "trigger." I don't avoid anything (other than exertion), but these programs seem to be for people avoiding things.

Any chance your friend who tried it would be willing to talk to me?
 

Pearshaped

...and then Life went pearshaped.
Messages
246
Likes
458
Location
Switzerland
@mbunke
this was not a friend,it was another patient w.ME.

Unfortunately i don't remember where i read it.Either on threads here on PR or elsewhere on the net.

arent there other threads about this? maybe you could find it with google.
 

Sushi

Moderation Resource Albuquerque
Messages
17,791
Likes
28,557
Location
Albuquerque
Messages
44
Likes
110
I think that if you only look for positive experiences with these psycho-behavioural programs, you will find them online (even on their own website). But I think someone should be critical and confront the positive reviews with the bad ones. So here is a bad one:
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html.

Lastly, my personal experience: I'm ashamed to admit that I tried the lightning process too (before I knew better). And it just made me feel more depressed an anxious, blaming myself as if I wasn't doing it right, because the thing didn't work. I later found out a pharmaceutical drug which eliminated my symptoms. And I'm now almost recovered thanks to this drug (here is my story: https://forums.phoenixrising.me/thr...ng-response-to-cinnarizine-vasodilator.76889/).

So be careful with these programs, they could be harmful for your mental health.
 
Messages
14
Likes
26
I think that if you only look for positive experiences with these psycho-behavioural programs, you will find them online (even on their own website). But I think someone should be critical and confront the positive reviews with the bad ones. So here is a bad one:
http://www.sayer.abel.co.uk/MESNORFOLK/LP.html.

Lastly, my personal experience: I'm ashamed to admit that I tried the lightning process too (before I knew better). And it just made me feel more depressed an anxious, blaming myself as if I wasn't doing it right, because the thing didn't work. I later found out a pharmaceutical drug which eliminated my symptoms. And I'm now almost recovered thanks to this drug (here is my story: https://forums.phoenixrising.me/thr...ng-response-to-cinnarizine-vasodilator.76889/).

So be careful with these programs, they could be harmful for your mental health.
Thanks so much! This is what I've found, that there seem to be only positive reviews, which is either really great or fishy, so I'm trying to find some negative ones as well. I'll look into both links you shared, and so glad to hear you're recovering!