Is he right or wrong?

[Martin aka paused||M.E.]

How I Cured My CFS / Fibromyalgia / POTS Symptoms - The Science Behind My Recovery
4:36 - How The Brain is Wired for Survival
7:14 - True Stress vs. False Stress
9:13 - Anxiety to Panic Attack Analogy
11:41 - Velocity Threshold of Anxiety = Panic Attack
13:13 - Stopping Panic Attacks
15:30 - The Feedback Loop: Residual Symptoms = Crash = Repeat
19:10 - The Stress Threshold
27:10 - 3 Key Steps of Fixing This Problem
27:45 - Step 1: Stopping Panic Attacks with Medication
28:44 - Step 2: Dealing with Somatic Symptoms (Brain Retraining)
29:32 - Anxiety is Like a Magnifying Glass
32:22 - Step 3: Building Threshold (Better Habits)
35:24 - Acute Pain vs. Chronic Pain
39:52 - Recovery is Not Linear, It’s Like a Staircase

I didn’t watch the video but I don’t have panic attacks and no anxiety. This reads like a psychosomatic disorder.

Many claim to have ME but in fact they have sth completely different. I recommend the ICC primer which gains more and more attraction in research thankfully.

Just an example: Dr Nath studies PEM. He wanted to be very sure that he only has ME and no other „CFS“-disorders. He had over 400 ppl who wanted to participate and where diagnosed with „CFS“. After a rigorous diagnostic process done by his team strictly following the guidelines (don’t know if it was ICC or CCC) and excluding other diseases who were overseen by docs who diagnosed „CFS“ only 7 (!) could participate in his PEM study.

 

[Learner1]

This is not normal. Its something about our nerves and their reactability.

well my nerves the just on High Alert . Sudden noises unexpected, that type of stuff.

These ARE common, but not necessarily psychiatric or somatic or "functional disorders." There has been a great deal of attention on dysautonomia, which includes these symptoms, particularly imbalances in sympathetic and parasympathetic nervous systems, much of which are driven by autoimmune antibodies triggered by infections like EBV, HHV6, HSV1, and many more. Medical problems that deserve the attention of our doctors and action.

 

[Wishful]

This is not normal. Its something about our nerves and their reactability.

After a lengthy period of ME, and all the lifestyle changes that occur, there's no way for us to be 'normal' in all other ways. Everything is interconnected, so having changes in how we react to stress is ... possibly normal?

 

[Rufous McKinney]

how we react to stress is ... possibly normal

understandable...given what we deal with, it seems very understandable but tell that to my bratty adult daughter who sometimes gets real mad at her mom about NERVE issues.

 

[Rufous McKinney]

by docs who diagnosed „CFS“ only 7 (!) could participate

wow thats a staggering statistic.

but its much of our problem. We need tight criteria for anyone in these studies.

we also hear alot about subtypes while somehow never getting very far on subtypes.

 

[YippeeKi YOW !!]

For as many cases that you can find people saying that they found brain retraining helpful, you will find an equal amount of cases on the other side of people who said brain retraining wasn't helpful for them or made their condition worse. It is for this reason and many others that I said that there was no 'universal truths' when it comes to what is helpful.

Actually, as near as I can tell, the ratio is more like 10 to 200. And of those 10, a fair amount are selling things like Gupta and Lightning Process.

If ME were a brain re-training issue, none of us would be here posting on these threads now .... we'd be out there again, living our best lives ....

"Brain Retraining" may help improve the ways in which we deal with this creepy little blowtorch of an illness, but it won't cure it ....

Please don't take this personally, @Abrin .... I like you, I just don;t fully agree with you on this issue, which is a sore spot with me ....

 

[Martin aka paused||M.E.]

Actually, as near as I can tell, the ratio is more like 10 to 200. And of those 10, a fair amount are selling things like Gupta and Lightning Process.

If ME were a brain re-training issue, none of us would be here posting on these threads now .... we'd be out there again, living our best lives ....

"Brain Retraining" may help improve the ways in which we deal with this creepy little blowtorch of an illness, but it won't cure it ....

Please don't take this personally, @Abrin .... I like you, I just don;t fully agree with you on this issue, which is a sore spot with me ....

+1 couldn’t agree more!

 

[YippeeKi YOW !!]

[QUOTE="Judee, post: 2374629, member: 28070"]I'd be more apt to believe him if I didn't see a link for booking a coaching call on his main page.[/QUOTE]
Yup. That;s the dead giveaway for me as well. Anyone who's really suffered thru this illness and found something that's helped them generally offers it to their community, free of charge, and rarely, if ever, holds 'coaching sessions' ....

Edit .... too try to correct the above quote from @Judee that just WON'T appear in its little pink box ....

 

[YippeeKi YOW !!]

My life lesson is: eliminate physical pain and the brain will adjust and stress level including anxiety will subside.

Don't entirely agree .... reducing physical pain may reduce some forms of anxiety, but there's a lot of other factors that go into the creation of anxiety as well ...,, and lowering or eliminating pain won't begin to touch them ...

 

[YippeeKi YOW !!]

*all speculation* but I don't want to make any claims and don't think he should either without talking with some ME/CFS researchers or having some metrics taken during his strategy and then after.

Totally agree. Right now, this is unsubstantiated ghost breath based on unsupported and unproven claims ...

 

[YippeeKi YOW !!]

... and now you can add the stress of worrying about worrying too much.

....

 

[YippeeKi YOW !!]

Yeah I'd agree with this from talking to PWME in person.

....
Why yaaaasssss .... best way to get to know someone is face to face .... preferably over a poker table, best way to really get to know someone pretty lickety-quick ....

Unfortunately, my ME couldn;t seem to hold the cards, having its hands full of all the other cards it holds ...

 

[YippeeKi YOW !!]

+1 couldn’t agree more!

It's good to see you !!!

 

[Martin aka paused||M.E.]

It's good to see you !!!

Thank you! Good to see you as well!!

 

[YippeeKi YOW !!]

Everyone charges money for personal coaching nowadays,that's normal ..

Not when it promises a cure for an illness that has baffled Drs, researchers, and well-meaning non-professionals, as well as everyone who suffers from it ....

 

[Abrin]

Actually, as near as I can tell, the ratio is more like 10 to 200. And of those 10, a fair amount are selling things like Gupta and Lightning Process.

If ME were a brain re-training issue, none of us would be here posting on these threads now .... we'd be out there again, living our best lives ....

"Brain Retraining" may help improve the ways in which we deal with this creepy little blowtorch of an illness, but it won't cure it ....

Please don't take this personally, @Abrin .... I like you, I just don;t fully agree with you on this issue, which is a sore spot with me ....

I promise that I don't take it personally and I can completely understand why it would be a sore spot for you and I completely respect your opinion on this issue.

Just to clarify, I didn't ever claim that brain retraining was any sort of cure for ME/CFS. I only said that some people have said that brain-retraining has helped them with the symptoms they were struggling with. If someone tells me that something has helped them personally then I will believe them. People have also told me that brain retraining hasn't help with the symptoms they were struggling with. I believe those people as well.

ME/CFS is still such a mystery that I'd honestly never make any claims about it in general which includes whether or not it will even be cured.

Just in case you were curious, I couldn't do any of the popular brain retraining programs even if I wanted to. I have aphantasia which means I am unable to visualize.

 

[hapl808]

As usual, the difficulty with this originates because of our inability to properly categorize 'ME/CFS' or other disorders. We don't know if ME/CFS is one disorder or a bucket for 50 disorders. Many people don't have 'formal' diagnoses, and even the formal diagnoses vary wildly. So when someone tries some DNRS, maybe it works for them. But we don't know what problem they were really suffering from - maybe anxiety, maybe 'ME/CFS' type disorder, maybe lyme, maybe CIRS, maybe some other poorly defined disorder.

Until we have some proper testing and biomarkers, all of this is extremely difficult to study or even report.

 

[lenora]

I do wish we could get that biomarker. That has been a sticking point since the beginning of the 1980's. I think it's a lot of things all rolled into one and given the same name. Yes, we have many similarities but also many differences.

The amount of funding is still not good....it's obviously not apportioned properly. I can remember when people with Ms were being told it "all in their heads" also. But then proof came along. The same will probably be true of this illness, too. Yours, Lenora.

 

[EtherSpin]

It is not a normal part of ME/CFS or POTS. Not saying no one is anxious, as some absolutely are, but it has not been a finding in the most of the copious research on ME/CFS. Thinking it feeds the notion of "treating" ME/CFS patients with psychiatric methods which can be tremendously counterproductive and avoids serious evaluation of biochemical and physical abnormalities in the body and treating these effectively, with things like anti-infectives, immunomodulators, mitochondrial and other nutrients, hyperbaric oxygen, mast cell meds, POTS meds, spinal treatments, microbiome manipulation, etc.

let me give context to make my badly stated point a bit better

I don't mean it creates anxious people, it subjects us to mechanisms that induce situational anxiety e.g. being disoriented by light and sound sensitivity when crashed, being adrenalised just cause we stood up for 45 seconds etc

I assure you I am very much averse to straight up clinical anxiety being associated with us - a silly doctor put a withering comment on the referral to a doctor here who actually had an interest in CFS back in 2013 because I had some family with Anxiety and my nerve tests (MRI etc) came up OK and they refused to test Small fibre stuff
Before I was ill I was regarded as unrattle-able in my stressful line of work, when I moved jobs because of relocation my boss joked at my farewell that they scraped the barrel trying to find an anecdote about me losing it with a staff member or student and couldn't and in my family I was the cool as a cucumber problem solver and sensible guy with all the contingencies - POTS has changed a tonne of things for me.


apologies for my original comment, reading it back now I see VERY clearly what it looked like I was saying , my error there.

 

[YippeeKi YOW !!]

I couldn't do any of the popular brain retraining programs even if I wanted to. I have aphantasia which means I am unable to visualize.

Oh wow @Abrin .... I never heard of that, either by it's imaginatively descriptive name or by its less fanciful description. What a bummer .... not life ending, but odd-making, sort of like color blindness ....

Does not being able to visualize affect your ability to conceptualize?

What a totally unique condition @Abrin !!!!