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Is he right or wrong?

SWAlexander

Senior Member
Messages
1,898
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
 

Rufous McKinney

Senior Member
Messages
13,251
Listening to the first 7 minutes-

(I am not inherently opposed to working on brain rewiring issues as I believe they can be helpful) (as is meditating, resting and working to try to remain calm, when one is ill which isn't reassuring).

I somewhat don't buy the fundamental evolutionary argument he presents. This notion that we lived in fear of lions and snakes, then somehow things calm down. I think this is a debated point of view.

No, in some places around 6000 BC, folks are walking around for 22 days wearing the skin of some other person, likely a recent neighbor- for ritualistic religious purposes.

No, for years- hordes might come over the hill.

I think our issue is: the ridiculous complexity that set in. Its not just simply, keep your grain stash dry, and watch for hordes. Enjoy a good story around the fire later.

Its retirement planning, careers, knowing what every other person is doing and there are millions of them.
 

Abrin

Senior Member
Messages
329
It was obviously right for him since he says that is what helped him. That doesn't mean that is will automatically be right for everyone else though.

This illness is so mysterious and in my long years of experience with it I've definately noticed there doesn't seem to be any 'universal truths' when it comes to what is helpful. Even worse, what is helpful to one person can be hurtful for another.
 

lenora

Senior Member
Messages
4,913
Exactly how long was this man ill? Some people recover in the first two years, no matter how bad things are. Unfortunately a lot of them do have problems later, how does that fit into his model?

Personally, I'm a great believe in the mind-body connection, but it hasn't kept bad things from my doorstep....it has helped me cope and I've grateful for that much.

OK, to use an example, the Industrial Revolution left people wide open with the fear of losing their jobs thus and company housing, and having no way to provide for themselves or their families. That's still anxiety provoking....it just that the forms anxiety takes over the years has changed. It's a primal instinct that I believe we're still working through....will it ever end? I don't have an answer for that.

I can move pain around in my body, I can be a pleasant person to be around, but I'm still sick. I guess that in my case I'm just lucky enough to have had surgery for neurological problems, thus perhaps I'm believed more than others....I can't answer that question.

What I do know is this: Anxiety in the early years of this illness is something I actively worked to control. I did not want to be on meds, and was still able to travel distances for meetings and read books that helped considerably. The anxiety went away for many years.

The second time it arose, I couldn't control it, didn't have the time or energy to attend these classes & my neurologist put me on a mild drug that controlled the anxiety. I only took it when I was having problems.

Fast forward many years later....I'm a different person and at a different age. My mental resources are smaller; I'm tired and illness has chipped away at any semblance of normalcy. I had shingles, one round after the other, I was exhausted both physically and mentally and this time my neurologist insisted that I go on xanax. The anxiety/panic disorder stopped immediately. Bear in mind that he's a great believer in natural cures, if possible, but he felt I was way beyond that point. To this day, I take two small doses/day and I'm just fine, although I do have access to tablets if I feel the immediate need....I don't.

Do I have an overload of adrenaline?.....it helps get me through day to day needs, talk to people when I'm far too exhausted to, and I still actively try to talk myself out of getting worse. I have multiple things wrong and actually feel that I handle them quite well. Yes, I'd like to see my daughter in CA and her children more than I do, but it can't be helped. She comes this way when necessary.

Fortunately, my husband was present from the beginning and truly believes that I'm ill....he has been in on the experience and is a kind-hearted person so begin with. I wouldn't dream of telling someone else that "it's all in their head." How do I know what's in their head, what actually happened and what the future holds for them or myself, for that matter?

Human beings are not a "one size fits all" category. There are many divisions in us, Mother Nature plays a huge role, our early years, our jobs....so many, many things. I understand what he's trying to say, but to also say that you're a victim of the early years of mankind is taking things too far. Think more positive than negative thoughts, be a kind person, don't hurt others....but none of them are guarantees that you still won't be ill. Even at that, if it's a "mental" problem what is it and how do we go about it controlling/curing it? Until these answers come along, I really don't see his way of presenting matters. Our lives are different, we're not equal and all we can do is the very best that's possible. Including knowing when to listen to people like him and when to draw the line. For most of us there are reasons, for the others....I guess they have their reasons to. Whether or not there are answers remains to be seen.

Another thought here: What enabled them to turn their fear off and spend the winters hibernating? Or did a lot of them fail to hibernate and became chronically ill? The lifespan then wasn't long, anyway...perhaps that helped, in a way. It's all still as perplexing as ever. I would be interested in any worthwhile answers. In the meantime, I'm just glad that something to help is available. If I'm addicted, I'm addicted....I'm willing to take that chance. Yours, Lenora.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I didn't consider my life to be stressful or having any anxiety, so I don't think that's necessarily a part of ME. It might contribute to ME, the way stress and fatigue or other health issues might contribute to an infection being more severe. Maybe some people can break out of ME by reducing the contributing factors, but I expect that's rare.
 

Rufous McKinney

Senior Member
Messages
13,251
Maybe some people can break out of ME by reducing the contributing factors, but I expect that's rare.

I just got a call from my ex employer. So I regrettably had to hear about something that is now screwed up and thats because I retired and I am not there to Fix It.

being The Fixer took its toll. So I am today simply being reminded of the profound stress and intensity of it all.

I got gynormous loads of stress removed from my life almost entirely. It has not yet saved me, nor has it resulted in Cured Now.
 

wabi-sabi

Senior Member
Messages
1,458
Location
small town midwest
I got gynormous loads of stress removed from my life almost entirely. It has not yet saved me, nor has it resulted in Cured Now.
Yes, I think this really speaks to our need for a better definition of stress and understanding of its effects.

While I find relaxation therapies helpful, it has not made my OI or ME/CFS go away. It does make my life more bearable.
I didn't consider my life to be stressful or having any anxiety, so I don't think that's necessarily a part of ME.
I wasn't going through a particularly stressful time in my life when I got sick either-just normal modern living and the stresses that everyone goes through. Life has gotten much more stressful since being sick, that's for sure! And I'm not able to withstand stress in the way I did when I was healthy, either.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
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SWAlexander

Senior Member
Messages
1,898
The only reality I gathered from this video is that I have accumulated lots of stress in my life worrying. Looking back I found, there was nothing I could have changed at the time.
Naturally, anxiety elevated during life because I could not eliminate past experience and for sure I could not erase my medical condition I gathered along the way or genetically inherited.
Being mindful, controlling feelings, or (not) believing in a god, did not erase my bad blood results nor eliminate the pain coming from my back problems or muscle weakness I have since early childhood.
My life lesson is: eliminate physical pain and the brain will adjust and stress level including anxiety will subside.
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
It was obviously right for him since he says that is what helped him. That doesn't mean that is will automatically be right for everyone else though.

This illness is so mysterious and in my long years of experience with it I've definately noticed there doesn't seem to be any 'universal truths' when it comes to what is helpful. Even worse, what is helpful to one person can be hurtful for another.

we don't necessarily know that though. there are whole youtube (interview) channels with a 30 - 100 videos of people saying what they think too them out of apparent ME/CFS and on some of those its really diverse claims although to give the guy a nod, they do seem to cite at least some anti-anxiety strategies.

its possible that Anxiety is a normal part of having ME/CFS and connected conditions like POTS and maybe spontaneous remissions also go hand in hand with anxiety alleviating -----> giving the feeling of having defeated anxiety and looking back on it like "what the hell was I thinking, maybe my mindset was the whole problem ! "

*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.

I hope he never has to think about it again and has a full life now
 

Abrin

Senior Member
Messages
329
we don't necessarily know that though. there are whole youtube (interview) channels with a 30 - 100 videos of people saying what they think too them out of apparent ME/CFS and on some of those its really diverse claims although to give the guy a nod, they do seem to cite at least some anti-anxiety strategies.

its possible that Anxiety is a normal part of having ME/CFS and connected conditions like POTS and maybe spontaneous remissions also go hand in hand with anxiety alleviating -----> giving the feeling of having defeated anxiety and looking back on it like "what the hell was I thinking, maybe my mindset was the whole problem ! "

*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.

I hope he never has to think about it again and has a full life now

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.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
its possible that Anxiety is a normal part of having ME/CFS and connected conditions like POTS and maybe spontaneous remissions also go hand in hand with anxiety alleviating

I've had many temporary remission, and none came from alleviating anxiety. Aside from some early ones that I couldn't figure out the trigger for, the rest were chemically-induced. Prednisone, cumin, iodine/T2; each of them snapped me into full remission, for a few hours each time.
 

Rufous McKinney

Senior Member
Messages
13,251
... and now you can add the stress of worrying about worrying too much. ;)

I possessed the nifty Anxiety and Panic Disorder Handbook (treatise). Its pretty comprehensive.

so around page 22 is the multi page check list of Items considered Stressful, and you can tally up your points and enjoy your SPECIAL Number.

(and my rating was before- "and then it all burnt up").
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
its possible that Anxiety is a normal part of having ME/CFS and connected conditions like POTS
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.
 
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Rufous McKinney

Senior Member
Messages
13,251
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.


well my nerves the just on High Alert . Sudden noises unexpected, that type of stuff. And there is no actual reason for this. I'm very chill (unlike past decades when I worked).

recently, I actually fell asleep on my back, and had three Monkey Falls Out of the Tree Events..,,,the big startle events.

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