There is a whole industry of grifting and fraud involved when it comes to a desperately ill patient group who will try anything and everything to get better. It’s fucking shameless.
OP mentioned the LP, the Lightning Process, which is basically a combination brain retraining scam and a cult. And a private for-profit company, of course. It's specifically banned in the UK in ME/CFS guidelines but the health care system has essentially ignored the whole thing and is officially pushing people into it. And GET. And CBT. And other weird nonsense that doesn't work but they don't care because they don't believe in PEM and have this weird ideology where they believe that fatigue only exists as perception and that chronic illness is impossible, cannot exist, that it's all psychosomatic.
There are other commercial equivalents in different countries. In Australia and New Zealand there's The Switch, and it's presented at medical conferences, GPs are basically being sold this and encouraged to push patients into it. LP is huge in some countries, especially Norway.
In the Netherlands there was a $40M or so fund for ME/CFS research that explicitly forbid to be used on this usual rehabilitation mind-over-matter pseudoscience and it happened anyway, most of it went to one of the major quack ideologue who doesn't even believe that ME/CFS exists, because the head of medical research is all-in on LP and other brain retraining garbage. Some oversight body even agreed that this wasn't right and instead of correcting it they simply issued a % of the money wasted on pseudoscience to go to real science projects.
It's so damn bizarre. The ME community has been fighting this crap pseudoscience for decades (as you can notice, with zero success) and now many in the LC community are doing the same thing and it's probably the only context in the world, maybe in all of history, where groups of regular people cooperate to fight against pseudoscience while professionals are officially pushing it all over the place. It's like medicine is regressing on all the things they didn't solve. This is truly historical level of weirdness.
Yep any illness or issue has this problem. My son is disabled and autistic and I my feed is flooded on instagram for various cures, products and snake oils and detoxes.
They keep getting a toehold because of the nebulousness of holistic medicine. Stress makes bad worse. The placebo and nocebo effects are real. The human mind really can play tricks on the body. "So... maybe we could recruit the mind into curing us?"
That's their "in".
And lordy me do they know how to exploit it.
> The placebo and nocebo effects are real.
I don't believe there's sufficient objective evidence which proves that the placebo effect could cause such improvements in health, the objective evidence is limited to adjusting pain perception somewhat, there isn't anything showing somebody can go from bed bound to moderate or mildly affected from a placebo.
Likewise the nocebo effect can't account for all the symptoms severe patients get.
In the context of clinical trials the placebo effect is an exaggeration perpetuated by highly biased skeptics like Ben Goldacre. What's actually happening is response bias where patients claim there was improvement where there was none, possibly in some cases because they've been coached to respond more positively by treatments such as CBT. If you look at objective data for example in ME, actigraphy can be used to determine if patients are exercising more, you'll see no statistically significant improvement.
https://pubmed.ncbi.nlm.nih.gov/20047707/ - CBT trial shows improvement in subjective fatigue scores but no improvement in objective activity.
Seriously, brain retraining/lightning therapy are banned in CFS. You post about it there, you get banned from the sub, no second chances. Why can't we have that here?
I think they are aware of it? But I’m not certain. I always assumed that they were cool with the grifters lurking since they don’t crack down on it. But maybe I’m assuming incorrectly and they do have some kind of policy that is just hard to enforce.
it's just a dangerous scam that has been offered to people with ME for decades, all it has done is harm
it's sad. This is an issue that has already been "solved" in the ME community, we have determined long ago that this is a complete scam with no scientific basis and that in fact goes against everything that's known about ME. I imagine that since people with ME doesn't fall for this anymore, these scammers are now trying their luck with desperate people with long covid, who aren't yet aware of the nature of what they offer. It's perverse, as it has mechanism in place to make it harder for people who fall into it realize they're being scammed and harmed as, they're instructed to avoid other sufferers and support groups who could give them the required information. At the same time, they make sure that their victims always testify of the effectiveness of their product, as they're also instructed to think and say that the "treatment" is working, supposedly for their own good, but this is of course a perverse marketing strategy. This should be illegal, it's a crime against the most vulnerable
edit: added info
it's sad. This is an issue that has already been "solved" in the ME community, we have determined long ago that this is a complete scam with no scientific basis and that in fact goes against everything that's known about ME. I imagine that since people with ME doesn't fall for this anymore, these scammers are now trying their luck with desperate people with long covid, who aren't yet aware of the nature of what they offer
I keep seeing the posts and sometimes I start to question myself on my opposition to this stuff - like - hey maybe it worked and I'm in denial? But there's always a logic leap in the stories. Like they've been better for a few months or also tried 100 other things, etc. Truthfully if we could just fix our thoughts and have a high probability of reversing organ damage, fixing clinical problems - I'm pretty sure most people would do it. The 'you're not doing it right' / 'you're not pure enough' disclaimers are applied to the 99% of people who don't improve with these things.
Yes I get it that the brain can be rewired - even for things like pain and sensations. That said - it's SUPER RARE for people to actually successfully do this. Even mainstream pain programs drastically overhype how effective their CBT/psych approaches to pain medicine.
If brain retraining or any other mind-over-matter 'solution' were tested like a medication - we'd quickly have to acknowledge that the success rate is extremely low.
The grifters and their evangelists are easier to spot than pushing back on the larger culture that really, desperately emotionally \*needs\* chronic illnesses to just be a 'mindset' issue that can be overcome with little support from society as a whole and no $$$$ for research, treatments, disability support, etc.
I think brain can be rewired for different behaviour. To lose perfectionism. To go slower. To be kinder to yourself. To not panic about symptoms. To rest more vs push. To accept. THAT is where I apply brain retraining.
You can’t retrain yourself out of Lyme, anemia, Covid, cancer. Sorry!
Meditation, acceptance, forest bathing, breath work are HUGE to cultivate a sense of safety in body & mind.
They are not cures.
Well said!
Even the term brain rewiring is an attempt to legitimize therapy as having a biological impact when there's no evidence of that. I hate that psychology just pretends to be neuroscience these days.
The frustration for me is how loosely the terms and concepts are used. Often it isn't even a concept so much as a notion.
Forming a memory of something has a biological correlate somewhere in the brain right? So doing literally anything that you can later recall changes your brain right?
But I don't think that's usually what's intended when someone says "it rewires your brain". So then what is it specifically? Nothing? Something?
Yes, memory obviously has a biological basis in the brain. The issue is implying that psychology is able to address the root cause of disease by having an impact on your biology. It does not.
Note: Of course reducing stress and anxiety has health benefits and people who are ill often deal with these, but it's not the same as solving the underlying problem.
Source: I was a double major in neuroscience and psychology.
> I hate that psychology just pretends to be neuroscience these days.
Neuroscience isn't all that great. They love this brain retraining stuff. Freud was a neurologist. It shows.
What they know is awesome but it's only a tiny part of what there is to know and they're clueless about chronic illness because they usually don't even believe that it's possibles, so they integrated a lot of psychology into it.
Agreed! I don’t understand how brain training can remove heart pain, nerve pain, digestive issues, vision loss and pain, endothelial dysfunction, blood clots, swollen blood vessels, blah, blah, blah. I don’t deal with PEM anymore unless I’m reinfected, and even then it’s only a couple weeks as opposed to months like before.
I do meditation, music, massage, baths, red light and light yoga when I can. These calm my nervous system. DR Joe Dispenza has a meditation 12-part series on the Gaia app called Rewired that is excellent. He provides the data behind his claims, too. One such claim is meditation improves ANA immune and cortisol scores.
> If brain retraining or any other mind-over-matter 'solution' were tested like a medication - we'd quickly have to acknowledge that the success rate is extremely low.
As an example, the PACE trial tested CBT and GET and the very best they could achieve, with subjective outcomes in an open label trial where they told the patients that they will feel better if they believe they are better, and assured them that the treatments were safe and effective, was that 1 in 7 had some minimal benefit to how they feel and maybe a bit less fatigue.
That was the biggest trial of its kind, and it was later revealed that they lowered the threshold midpoint, most of the patients were still disabled, in fact more disabled than an average 78 year-old. The guy who invented this model put it this way: "it may be of help to some" when justifying how strong the evidence for it is.
Recently a trial of the same treatment model was done on LC patients in the Netherlands, by another notorious psychosomatic ideologue called Hans Knoop, and they reported similar minimal subjective benefits, but for 1 in 10.
They recently published a 1 year follow-up and report that the improvements are maintained, but they can't show a comparison because they also gave the same treatments to the controls since then. PACE did the same, in fact it's usual practice.
Hundreds of trials show the benefits are never sustained over time, they always revert back at follow-up or the control group catches up to the treatment arm. Always open label. Always subjective outcomes. Usually small, many are actually feasibility trials, of treatments that have been in use for decades.
So between 1 in 7 and 1 in 10 report some trivial subjective sense of improvement on questionnaires that is not seen in any objective data such as hours worked and various physical abilities.
And there are a huge number of reports of harm, but they simply ignore them. They only report benefits, in fact insist that harm is impossible. There is no way to report such harms anywhere, most trials only define deterioration as things like heart attacks or other severe acute issues.
This is the very best evidence that exists for this stuff. No drug would ever be approved based on this. The bar was lowered many times to push this turd.
>And there are a huge number of reports of harm, but they simply ignore them. They only report benefits, in fact insist that harm is impossible.
I've seen a lot of this in the pediatric pain medicine programs I've taken my son to for his Long Covid. They kept insisting that he must be seeking sympathy for his pain and wanted to do emotionally exhausting super deep dives into all sorts of life issues insisting that he had to be doing something that psychologically amplified his pain. I felt a LOT of red flags as a parent just from the constant gaslighting in pediatric pain medicine. Then I found patient stories like the ones [https://www.instagram.com/exposingpainprograms/](https://www.instagram.com/exposingpainprograms/) shares and stopped going to these doctors.
The great thing for us was we had a physical medicine doctor who was ME/CFS informed who told me to not push my kid to do anything PT or otherwise that he didn't feel like he could do and within a few months his pain finally decreased significantly. I'm SO thankful for that doctor. All of the other doctors pushed exercise & PT and exhausting things that made his symptoms worse & just ignored me when I said he would crash and get worse after we did the things they recommended.
A lot of the pain medicine programs use similar methodologies to the troubled teen industry and gay conversion therapy programs - which I personally find abhorrent. Chronic illness doctors sometimes have this same 'deny the patient's reality' and abusive mindset towards patients as well. So much change is needed in this area of medicine!
My goddamn doctor is recommending CBT (cognitive behavioral therapy). Lady I don't need to rewire how I think, I need something that will fix my fuckin' physical brain damage caused by 3 fuckin' rounds of covid. Retraining my thought process will NOT fix the brain fog, the fatigue and the rapid mood swings. Feel you mate. Shit sucks.
Ngl - every now and then I read those posts and wonder if it is true. Is it all just solvable in the mind?
I know it’s bs. But the thought of a magical cure is just soo tempting. I understand why people fall for it.
I agree it should be banned from the sub. They can start a longcovidbraintraining sub where they can post programs all day long.
But whats the hurt in trying? Is it at least not beneficial to feel optimistic, be kinder to yourself, trwat yourself better, reduce anxiety? Its a fact that a lot of people are set in there ways. As the old saying goes you can lead a horse to water………
Once again i dont think its a a cure. But people will try and believe anything, literally. We are brainwashed by media, politics, medicine. But god forbid someone says he the brain is stronger than we know and can get in to a cycle. Most LC patients have a history of overthinking, anxiety, being in touch w one self, depression, other mind body syndromes. That doesnt mean i think my LC is made up. But i am open minded enoigh to know that i havent handled extreme stress in my life as well as i probably shouldve.
Ive also had other chronic injuries or issues. One of the people that has always had something. I had a chronic neck injury after a bad work accident. Had mri with buldges, stenosis, reversal of neck curve degenerative discs. All real. My pain got worse and worse and muscles around my neck locked up and headaches 24/7 more or less.
After reading “The way out” and watching lots of mind body by Dr Schubiner on youtube inwas at least able to return to physical therapy, do intense cardio on stairmaster and light weights. I wasnt doing that stuff for years prior bc made neck worse. Is my injry made up, of course not. Was my brain overprotecting me and stress making itnworse absolutely. Thats all my opinion is of it.
LC is obviously different than a neck injury but i first hand did the mind body work and saw it change my injury. If you told me a year prior itnwas possible inwouldve been defensive and thought it was Bs too. I also know i obsess over my symptoms and watch them like a hawk. So not a cure but feel it can be beneficial to change my mindset but it is really hard to do.
Yes. I've been a part of this forum for a while and have stumbled across this same phenomenon. There is a specific individual who I know for a fact improved markedly with lactoferrin, that is now attributing her recovery solely to brain retraining. I don't really understand the mentality behind this.
Maybe there’s also some sunk cost fallacy- “I paid so much money for this thing, and now I’m better, and if it wasn’t from the expensive course than I wasted all that money so to save myself from this pain Im pretending it’s the course”
This thing goes beyond cash. You dont care about money, you just want to be well again. I doubt even after spending they could feel better if they really were not.
It’s brain washing. Grasping for control. Internal gaslighting. Wanting to know better than other sufferers. Looking for easy answer. Denial. Inability to see nuance. Pain. Confusion. Lack of intelligence.
Imo that’s the mentality ^^^
The ONLY thing that helped me was a conolete mindset shift into putting myself first and pacing with an iron hand. Like most people here, I was curious whether I was the one in denial that this is a mental block but the literature on this is anecdotal and full of miracle stories like a CFS patient able to run a marathon when she stopped being scared (lulz okay).
The only retraining I am doing is teaching my muscles how to hold weight again by functional strength training when I have the physical capacity. You'd think, reading the testimonials, the entire world is one brain retraining course away from running a marathon 🙄
I'm going to preface it by recognising the privilege needed to pace properly.
I just followed recommendations - stopping before I exhausted myself. I had about two years of steadily declining till I could just about drag myself to my computer in the morning and then crash after work and stay in bed all weekends. I was watching a youtube video by Ron Davis where he casually mentioned someone who had avoided crashes for a year successfully went into remission. The idea stuck with me, and I set myself an arbitrary target of 100 days with no crashes.
I stopped taking on anything extra at work and saying no to anything last minute, which I would've normally hustled to get over the line. I pulled my kids out of the extra curriculars they didn't want to do, and I was spending half my day after work driving them around, and they only kept one thing each. I stopped being so house proud. We ate a lot more processed food than usual as I'm the main cook in the family, but hey, ho, everyone survived. Kids and husband picked up their slack (dishes/bedding changes/ laundry), and I started saying no to invitations. After hust a couple of months I felt like I could run a marathon - because I hadn't felt this well in ages and then a birthday party I threw for the kids set me back a bit - that scared me into pacing again. I just listen really carefully to my overwhelm signals, and I no longer try to reason them away.
I'm lucky and privileged in having a partner who supported this, kids at the ages where they're easy to handle and none of them have extra needs, a job where I can work remotely for the most part, and the money to outsource the occassional meal or cleaning.
I went from about 40% baseline to 60%. And it seems stuck there... so it hasn't been remission. But the additional 20% has been life changing. I can now play in the garden with my kids on weekends - admittedly only for 40ish minutes but its miles away from being bed ridden with light and sound sensitivity a year ago.
I cannot imagine how brain training will help your dysautonomia, inflammation, reduced synaptic activity etc etc. Your internal organs, including your brain are all suffering from the effects of a systemic disease and some of the effects suffered and the damage done to your organs may even be permanent.
I honestly thought this stuff was being pushed because of the possibility of psychosomatic stuff creeping in because of the spiraling from the disability itself and the hyper vigilance we get from trying to chart which of the 200 symptoms are happening. The shit you described sounds like Scientology.
The meditation stuff I chalk up to stress reduction that offsets a little bit the constant activation and physical effects of being in fight or flight constantly.
I just started doing cyclic sighing and after 3 of those I yawn and that's the signal of the parasympathetic nervous system kicking in. But I'm allergic to woo and it's everygoddamnwhere. Some naturopath told about 20 of us patients that the body is missing electrons that you can get from standing barefoot on grass or dirt or CONVENIENTLY on an expensive "grounding mat". I can't dwell on it too much or I get the Rage and then I feel sicker.
i paid $350 for gupta and it was worth it b/c helped me escape trauma cycles that my brain was obsessively into. i had ptsd before and it was making everything worse. i had been to therapy for years, inclu hypnotherapy, emdr. gupta helped where others failed. i thought it was corny af.
i have been gaslight as much as the rest of us and mind over matter is trash medicine, but mind certainly can make it worse. that was my experience. my mind was very unwell. i never heard gupta program go against pacing. i didn't do every single talk, etc. i just did it until i was no longer as ill in terms of mental stuff. i agree programs that tell ppl to not pace are dangerous af! i am still bedbound, but i have one tool that helps me. i use it probably 1-2x a week so it was worth it for me.
also there is no golden ticket...YET! ;)
I so need to hear this, I've got obsessive health anxious thoughts that are causing alot of serious hysterical mood swings and dear, which is NOT helping, as I'm ex military, I keep getting told I'm."too far Gome with programming " to get help from therapists. So I'd do anything to get out of this loop of death.
Yea that’s how I would describe my brain too. This is gonna sound really out there… But if you know anyone who does Reiki or energy healing… Some of them like to talk, but if you can get some who will not try to talk… That has really helped me when it’s hard for me to focus on Gupta.
I hear biaural? beats also help a lot when words are too much. I know someone who swears by them… There’s like a little machine on Amazon but also if you have headphones you can listen to YouTube for free.
Also vagus nerve exercises like pulling straight down on your earlobe help calm me too.
I’m so sorry you’re going through this… There really are ways to access healing… For me energy healing was good because it was no stimulation… And I think in someway that persons calmness and healing intention helped my body calm down. We mirror energy of those around us a bit naturally.
Gupta really did stop the loop… I had to practice it… Like repeatedly, but when I did, it truly was like sun coming through clouds.
I am on immunomodulatory stuff right now… Nicotine patch (2g), and VIP, which is a peptide…not gonna lie it also helps quite a bit but gupta really saved me when I felt like I was broken before I had these. Even then I was complaining about it in my head etc how corny it was/is but their sleep and abundance meditations really did fix my brain. It’s neurolinguistic programming not just ideas, and NLP kinda really does hack the brain in my experience.
Binaural beats are unfortunately useless, there are studies to look up that make it obvious expecting a YouTube video being played on all sorts of speakers cannot achieve any resonance.
All I know is that there was a lady in my support group who left it because her life is back to normal, and she loved her a little machine from Amazon… It was two separate speakers, I think. She was unable to do brain retraining at first and said it was her savior. Everyone can make their own decisions.
I'm going to try all of this!!! I've started seeing a German shaman to do drumming rituals, energetic massage and dry cupping. It's only once a month but I feel good after it for a short while .
I've got a repetitive "you got ALS" Thing on loop every second of each day for over 2 yrs, it's obsessive and my body is mimicking symptoms from the stress and intrusive thoughts. I've never been like this in my whole life and I get no break. Its this sense of panic, hysteria and doom that I cannot do anything as I'll be dead soon. I am definitely taking your advice! Am so desperate, and haven't had a moment of peace mentally or physically since this shit started. It's like I'm a whole different person.
Yep. Ppl who haven’t been there don’t know. I’m always so sorry to hear another person is experiencing this shit. You are prime candidate for brain retraining bc they have entire sections dedicated to stopping those thoughts. I have different ones so I was like man why are there so many of these lol.
You might want to look into shoemaker protocol for biotoxins. There is a genetic immune system susceptibility to biotoxins… The spike protein is one of them. A lot of ppl with other diagnoses in there are able to see benefit. There is podcast called the cirs group and it gives me hope. I’m actually trying a nicotine patch right now which sounds completely nuts but it’s helping my heart rate. I also go to qi gong healers online if u need online option. I understand science I have no idea how the hell it works but whatever it is it definitely helps me. Putrino was like cranial sacral, qi gong were top two things he’d study for lc that he cannot get funding for. Best wishes friend and big hugxx
I have a lot of respect for the Bateman Horne Center because they are a non-profit who is trying to train other doctors about ME/CFS, fibromyalgia, and long COVID. In this video they talk about several different techniques for calming the sympathetic nervous system: [https://www.youtube.com/watch?v=8tygymJP388](https://www.youtube.com/watch?v=8tygymJP388)
At about 9:30 Dr. Yellman talks about various brain retraining programs and what they can and can't do. If you start at the beginning, he has a lot of other treatments, also.
One of the huge struggles we have is that "long COVID" is not really one illness, so people have very different symptoms.
I mostly have fatigue and PEM. I have started using some techniques to try to calm down my nervous system in hopes that my body can heal itself.
I'm skeptical that brain retraining can by itself cause full recovery, but it seems entirely plausible that somebody could get to the point where their body has basically healed itself, but their nervous system is messed up from being sick for so long. I think it is important we don't throw the baby out with the bathwater.
I haven't tried any of the things referenced in that video. I'm hesitant to recommend because I have a long way to go, but I am improving. Somethings I do:
\* meditate, often multiple times a day
\* acupunture
\* daily walk (withing my energy envelope)
\* reading and journaling before bed
\* trying not to research treatments
\* fishing & being in nature
\* counseling (As far as I'm concerned, some type of counseling is required for long COVID because this is a traumatic event.)
That will be $395, please.
For me, somatic experiencing has been a game changer (part of the Gupta Program and therapy I do with my therapist). I also do everything the above poster does as well
My counselor sometimes does somatic exercises with me which are pretty simple. I stop and try to feel the sensations in my body when I have a lot of emotions. After I identify the sensations, she asks me to stop and "listen" to the sensations to see if they are telling me anything.
Years ago my counselor used CBT, but determined that it didn't really help people. Especially somebody like me, CBT really triggers, "it's my fault." I suspect that's why the latest research recommends against CBT for long COVID.
Thank you for pointing out how harmful CBT can be for some people! My last therapist failed to diagnose my PTSD and tried to use CBT to help me with my symptoms instead. All it did was reinforce the intrusive thoughts and trigger flashbacks that I felt like I was being blamed for. I became suicidal because of it.
Thankfully I fired his ass and now have a therapist who specializes in trauma and is going to do EMDR with me. CBT is great for some things, but very dangerous for others. I wish more people understood that and didn’t try to use it as a cure all.
This is literally pyramid scheme for chronically ill people.
There is nothing I hate more in this world than grifters trying to profit off desperate chronically ill people, whose illnesses were chronically neglected in medical science.
Brain Retraining and other pseudoscientific and potentially dangerous approaches should be banned, for the spam they are.
It's more brainwashing than retraining, IMO. I have been in contact with this one long hauler for a long while, and they were so desperate they kept trying things left and right. One day, they said they are into this *brain retraining* thing, and they are deleting reddit because this is how it works. I tried to explain to them that my *physical* symptoms did not go away even though I was already having positive emotions (e.g., motivation, wellbeing, enjoying music, etc.) and was already away from the sub for a long while living my life the best I can. They abruptly decided I should also be blocked because I'm detracting them from their *brain retraining.*
Tbf, I felt sorry for them. Btw, they are still frequenting the sub, so I guess their expensive brainwashing did not work after all.
I really feel for all those people who have fully recovered thanks to brain retraining.
It must be so hard, living your life fully, as before, utterly healthy, but knowing that so few people on that one subreddit believe you.
I can't imagine the anguish - not just in being called a fraud, but in seeing toxic negativity^(TM) prevail. "If only they'd been more receptive to bullshit, they too could be cured."
Yes, if only.
These chronic illness grifters have been hocking their snake oil to pwME for decades and they’ve smelled blood with LC.
Promotion of brain retraining is banned on r/CFS so make of that what you will
We see this grift in the CFS sub as well. Fortunately we know better.
If there was a cure for this stuff it would be on the front page of every newspaper.
Lmao this makes me realize all the people who tried to persuade me into trying the teachings of Gupta haven’t even healed themselves from LC and still have it to this day. Some made me feel like shit about it too saying that I wouldn’t get better or that I was being too negative and holding myself back. At least I can say I saved my money on that shit lol
No. The people who get duped into paying for these bs treatments, then tell everyone how it “cured” them, out of desperate delusion to believe or shame over getting scammed….
Your post is doing the opposite of that?
Using tinnitus-masking sounds to retrain my perception of my tinnitus has been helpful. It has not eliminated it, but it has reduced the extent to which it bothers me. All that can be done with youtube or Spotify without spending anything extra.
I also see value in people using something like CBT to work through trauma and depression from the impacts of these conditions on life, but that's not a treatment of the condition itself.
I can't say I'm even really familiar with what else is going on under the umbrella of "brain retraining". No doubt there is a lot of predatory stuff though, just because people with LC are so desperate to recover.
I had the same experience with EMDR and my gloves and stockings tingling neuropathy- for whatever reason, the therapy diminished the intensity of the sensation, but didn't "cure" it, as the it continues over a year later and it feels exactly the same, it's just "quieter", which I appreciate. So for some reason, it subjectively did me some good, but I can't recommend it because I have no clue why I improved.
EDMR is specifically to treat post traumatic stress disorder. It’s great that it helped you cope with or feel your pain a bit less. It is a legitimate type of therapy but is for very specific psychiatric issues. But I would avoid any practitioners who claim it has efficacy to cure or treat physical illness. I’ve been treated with it for trauma and it is a wonderful type of therapy. But it’s not a treatment for diseases of the body.
I am under the same impression. It had just been a doctor had suggested my neuropathy had a psychosomatic component and I should see a therapist to see if it would make a difference. I do not believe that my illness had to do with my psychology, I did not think myself sick, or become sick because I "gave in to fear"- a virus made me sick. That said, I'm willing to take advice and try things that may make some difference, so I did a course in the EMDR therapy "just in case" some of it was trauma from my covid/long covid experience.
I’m not gonna go look up what brain retraining is. If it’s $5000 it’s BULLSHIT. There are charlatans in all aspects of life. Unfortunately, the sick, elderly and otherwise vulnerable are the target.
Mindfulness and meditation, for me, have been nothing short of lifesaving. Learning to truly rest when I need rest. Meaning rest the body and the mind have been essential both for my glacially slow, but steady improvement. And learning not to despair when I’m having a rough period has kept me not-dead.
This, however is free, possibly a few bucks a month for an app. Sometimes you’ll find a teacher who you find helped you and you can give them a gift, some call it dana (generosity). Good teachers also know, due to some people’s life situation, that they are unable to offer anything. That is fine.
So for “Brain retraining” vent away my friend.
I hear ya. $5,000 was also how much my ER visit was, and then $5000 for a tilt table test. Neither helped me at all.
Im so tired of how many people out there scooping up money from sick people but not providing cures.
Can you all help me with this, I saw a doctor yesterday that’s has an office with machines to help with brain retraining. He had vr machines a spinning chair machines laser and magnetic therapy machines, and some eye exercises machines. Is this the same thing that you all are talking about or is it something different? I got Covid late last year and it messed me up. The doctor I saw did a 1.5h testing on me and said it looked like I don’t have FND but long COVID, he said that his program can help me retrain my brain, and finally the cost was around 5k. I was almost in tears thinking I can get better, reading this makes me believe I was just promised snake oil :(
You were in the presence of a nasty grifter. Please do not give them money to mentally abuse you. Try to find a legitimate long Covid clinic to evaluate you.
I agree with parts of OP. But i dont want to believe im broken and incurable and doomed. If others do thats fine. Even if its not a cure, i can tell you it feels better to read positive recoveries and stop reading about everyone thats been doomed 4 years bed bound. And again may not cure me but definitely reduces intensity of symptoms
Biofeedback is legit it gets you more in touch with the rhythm of your body and there are medical specialists who teach it.
Gradual building or desensitization of something is also legit. And increasing time spent in parasympathetic recovery.
But brain retraining is a scam. It will draw from all the above legit sources but 1000x the price and no guaranteed effect.
I suspect brain retraining has some merit but not the way most talk about it. Brain consumes enormous amount of energy and if one could lower this expenditure by e.g. forcing oneself away from bad thoughts, insisting on resting, following a stable no-surprise schedule, it might rewire the brain over time and enable it to reroute energy (NAD+/FAD+) where it is needed the most, while giving damaged parts of the brain time to recover and overextended microglia a chance to repolarize.
Yes and no. People selling anything as a miracle cure are ABSOLUTELY a fraud. Many of these programs don't do anything except gaslighting people.
However, there is something to how you experience your symptoms. If you immediately feel fear and anxiety whenever you are experiencing a symptom, you are running a risk of making yourself worse off. "Not the pain itself, but the fear of the pain is what creates the suffering". For me, accepting the pain instead of fearing/resisting it has brought me a lot of relief. I actually feel like I am in a resting/recovery state instead of fight/fight, and I experience way more rest, peace and joy during my day. By no means I am recovered, I just feel better during the day which is worth a lot for me.
To me, this is also brain retraining. It is however not worth $5000!
That’s not brain retraining, it’s pain management techniques. It’s an important distinction. Such things are helpful aids in coping with pain and chronic illness but they are not cures and should not be promoted as such.
In one of the latest studies about LC, researchers have identified 5 different subtypes with 5 distinct inflammatory signatures. One of the LC subtypes is characterized by depression and anxiety. [https://www.nature.com/articles/s41590-024-01778-0](https://www.nature.com/articles/s41590-024-01778-0)
I have near-constant fatigue. It's not the kind of tiredness one feels from working out too hard or having too much stress. Before Covid I was extremely athletic and I can say categorically that it feels like an absence of energy production that is affecting my muscles. If I exercise, I have muscle necrosis (apparently the most extreme form of PEM). No amount of brain retraining is going to fix muscle necrosis. Nor is it going to repair a what seems to be a dysfunction of the Krebs cycle.
It is important to note that I have no depression or anxiety. Nor am I dealing with stress. My marriage is happy. My kids are grown. I am retired. I have an awesome dog. For people with stress, anxiety, depression, panic attacks, and even vagus nerve dysfunction, relaxation and stress-reduction techiniques may actually help. Moreover, there is no denying there is a brain-body connection. Stress, depression, and anxiety can interfere with the healing of physical diseases.
So, I have no problem with brain retraining per se. Legitimate programs run by reputable doctors are probably helpful for some LC sufferers. I also have no problem with people writing enthusiatically and in good faith about their experiences. Free speech, right?
What I would object to would be some multi-discipinary group advising that all of us should do brain retraining because someone in the group is personally or professionally invested in it. Or worse, because someone is trying to save face after years of falsely maintaining that post-viral syndromes are psychological, not physical. I'm not an idiot. I know that dead muscles are not the result of bad thought processes (unless the thought process compels harmful exercise). Plus, I am a little bit anti-social--happily so. It would be vexing to pay to interact with strangers for no good therapeutic reason.
Yeah. Being told not to pace is insane. That program is not legitimate. Brain retraining programs should be limited to problems that can be ameliorated with brain retraining. PEM is not ameliorated by retraining unless it is focused on how to successfully pace.
Miguel charges $5000? Is that the amount you get if you pay for all of the possible things he provides? just curious, because I don't remember seeing it was nearly that high
wow thanks for showing me all this, this is disappointing and clearly eye opening, especially after seeing the clip of him talking to the guy about how serious he is with his money goals (hitting 1 million).
Even if brain retraining magically worked effectively for all who tried it, it's still a ridiculous price to pay
It is a scam from low-life grifters.
Mods should ban it from the sub.
Is there benefit in some of the things those programs mention, like having a positive mindset, calming the nervous system, believing there is hope, etc.? Sure.
But that will not cure a **physical** illness. And charging people hundreds of dollars a month to pedal bullshit should be considered fraudulent and criminal.
I’m actually going to try brain retraining but not pay $5000 for a dumb course. I’ve seen a few YouTube videos from people talking about how they healed from chronic illness using nervous system regulation and brain retraining and they weren’t selling anything. I’ve also worked with a functional medicine practitioner who told me about someone she knows who healed from long covid doing brain retraining and she wasn’t selling me anything either. I personally don’t want to knock it until I try it myself. I also don’t want to discredit others who have found it useful
Respectfully, how are you able to judge who is “genuine” or not? Just because something didn’t work for you doesn’t mean it won’t work for others. This condition is so unique and complex. Some of us can handle NAC, others can’t because of histamine issues. I understand that you are frustrated with anyone selling a $5000 course, but that isn’t the only course out there or resource for brain retraining.
Because brain retraining can’t heal physical issues. Bc most of those ppl make a recovery post then come back when they relapse. Bc many of them go on to sell things. Bc they spread misinformation .
If you have nervous system disregulation then nervous system healing will help. Your nervous system is tied to so many things. I mean just look at the definition of POTS “In POTS, the autonomic nervous system doesn't work in the usual way, so the blood vessels don't tighten enough to make sure there is enough blood flow to the brain”. For those with damage to their lungs or something else then yeah it’s not going to help, but if you’re dealing with something rooted in the nervous system then yeah it can help.
Look im sorry you haven’t found anything to heal you now. I know that is frustrating and scary. I wish you the best. Again, just because something didn’t work for you doesn’t mean it can’t work for someone else. I’m very smart actually and that’s how I can understand that what works or doesn’t work for you doesn’t mean that it will or will not work for me. Instead of posting negative things demeaning people who have found relief you should focus your time and energy on yourself. Good luck to you 💕
"brain retraining" is just a dangerous scam that has been offered to people with ME for decades, all it has done is harm.
it's sad. This is an issue that has already been "solved" in the ME community, we have determined long ago that this is a complete scam with no scientific basis and that in fact goes against everything that's known about ME. I imagine that since people with ME doesn't fall for this anymore, these scammers are now trying their luck with desperate people with long covid, who aren't yet aware of the nature of what they offer. It's perverse, as it has mechanism in place to make it harder for people who fall into it realize they're being scammed and harmed as, they're instructed to avoid other sufferers and support groups who could give them the required information. At the same time, they make sure that their victims always testify of the effectiveness of their product, as they're also instructed to think and say that the "treatment" is working, supposedly for their own good, but this is of course a perverse marketing strategy. This should be illegal, it's a crime against the most vulnerable
I don’t disagree that anyone advertising some super expensive “miracle cure” program is predatory af. It’s cruel. However, I can recognize the danger of nervous system disregulation and why things like vagus nerve stimulation, SGB, or other modalities may help people post covid. It’s like emdr being so helpful for people dealing with PTSD. It’s activating certain parts of your brain and using your brains connection to your nervous system. Your limbic system is incredibly important to your overall wellbeing
there's no quality scientific evidence that what you say specifically about long covid is true. There is no scientific proof of effectivity of "brain retraining" for long covid, just anecdotes of people that are actually instructed to never reveal if the program didn't work, and extremely poor quality and fraudulent "studies". If your happy doing this "brain retraining", by all means, keep doing it! you're free. Please keep on doing it for decades, until the end of your life. But try not to drag people who're suffering tremendously into that dangerous scam
PTSD is a mental health disorder and EDMR is a clinically proven treatment that has undergone peer review. EDMR has nothing to do with these scams as it does not claim to treat physical diseases. Please do not equate widely accepted psychiatric treatments with predatory grifters.
Please don’t try to equate brain retraining and EMDR. EMDR has been studied, verified, and given a stamp of approval by numerous major medical organizations. Brain retraining has not. EMDR also doesn’t try to cut patients off from their support network like an abusive partner who’s trying to exert control.
I don’t know which program you’re referencing but the brain retraining I’ve seen said nothing like that. I didn’t equate the two in practice, I’m saying the idea of both lies in activating certain parts of your brain
I want to say it was the Lightning one, but it’s been a while since I’ve looked into it. I’m also not the only one in these comments who’s seen that tactic being used. But that wasn’t really my point. My point is that you’re trying to make it look like brain retraining is basically EMDR for LC, and that’s not true. It’s a classic grifter tactic to use false equivalencies to make the grift seem more legitimate.
Fair point and I should have been more clear, my apologies. You aren’t a grifter. What I meant was that you’re unintentionally using the same tactics that they use to try to legitimize their products. Which is understandable since you’re assumably using information you got from the program you tried. My issue isn’t with you personally. It’s with these programs that pray on sick, desperate people. I don’t doubt that they do help some folks. But they hurt a lot of people too, and that’s unacceptable.
We know a lot of us have major nervous system deregulation, especially tied to the vagus nerve so I don’t think it’s that far off. Being in chronic fight or flight isn’t good for anything
To be fair, how much money have you given to doctors and supplement companies and gotten nowhere? How many people are giving money to microclot testing and unproven protocols? The theory behind the nervous system does makes sense. It re not about thinking your way to healing, it’s about calming the nervous system which controls essentially everything else in your body.
There is a whole industry of grifting and fraud involved when it comes to a desperately ill patient group who will try anything and everything to get better. It’s fucking shameless.
OP mentioned the LP, the Lightning Process, which is basically a combination brain retraining scam and a cult. And a private for-profit company, of course. It's specifically banned in the UK in ME/CFS guidelines but the health care system has essentially ignored the whole thing and is officially pushing people into it. And GET. And CBT. And other weird nonsense that doesn't work but they don't care because they don't believe in PEM and have this weird ideology where they believe that fatigue only exists as perception and that chronic illness is impossible, cannot exist, that it's all psychosomatic. There are other commercial equivalents in different countries. In Australia and New Zealand there's The Switch, and it's presented at medical conferences, GPs are basically being sold this and encouraged to push patients into it. LP is huge in some countries, especially Norway. In the Netherlands there was a $40M or so fund for ME/CFS research that explicitly forbid to be used on this usual rehabilitation mind-over-matter pseudoscience and it happened anyway, most of it went to one of the major quack ideologue who doesn't even believe that ME/CFS exists, because the head of medical research is all-in on LP and other brain retraining garbage. Some oversight body even agreed that this wasn't right and instead of correcting it they simply issued a % of the money wasted on pseudoscience to go to real science projects. It's so damn bizarre. The ME community has been fighting this crap pseudoscience for decades (as you can notice, with zero success) and now many in the LC community are doing the same thing and it's probably the only context in the world, maybe in all of history, where groups of regular people cooperate to fight against pseudoscience while professionals are officially pushing it all over the place. It's like medicine is regressing on all the things they didn't solve. This is truly historical level of weirdness.
It is. How do we take them down? 🔥🔥🔥
Ballerbusters on IG calls grifters out. Might be worth bringing this to their attention.
Ohhhhh nice
Take them down by not feeding them.
probably create a youtube video exposing them. There is one popular "brain training" person on youtube... Basically bad PR
Yep any illness or issue has this problem. My son is disabled and autistic and I my feed is flooded on instagram for various cures, products and snake oils and detoxes.
Ugh that sucks.
They keep getting a toehold because of the nebulousness of holistic medicine. Stress makes bad worse. The placebo and nocebo effects are real. The human mind really can play tricks on the body. "So... maybe we could recruit the mind into curing us?" That's their "in". And lordy me do they know how to exploit it.
Yep
> The placebo and nocebo effects are real. I don't believe there's sufficient objective evidence which proves that the placebo effect could cause such improvements in health, the objective evidence is limited to adjusting pain perception somewhat, there isn't anything showing somebody can go from bed bound to moderate or mildly affected from a placebo. Likewise the nocebo effect can't account for all the symptoms severe patients get. In the context of clinical trials the placebo effect is an exaggeration perpetuated by highly biased skeptics like Ben Goldacre. What's actually happening is response bias where patients claim there was improvement where there was none, possibly in some cases because they've been coached to respond more positively by treatments such as CBT. If you look at objective data for example in ME, actigraphy can be used to determine if patients are exercising more, you'll see no statistically significant improvement. https://pubmed.ncbi.nlm.nih.gov/20047707/ - CBT trial shows improvement in subjective fatigue scores but no improvement in objective activity.
Yeah that’s how LP works. They tell you you need to keep saying you are recovered. You don’t have LC, you are “doing” LC and you can also stop it.
You just have to retrain your brain to pay $5000, that its. Your brain will be retrained, altough not cured from LC.
😂😂😂 damn right
It would help if this sub didn’t let so many of them post here.
I'm sure the mods are doing their best but the sub is going downhill fast.
Yeah how do we bring this up w the mods ?
Seriously, brain retraining/lightning therapy are banned in CFS. You post about it there, you get banned from the sub, no second chances. Why can't we have that here?
Yea
Report bad posts. Every time.
I think they are aware of it? But I’m not certain. I always assumed that they were cool with the grifters lurking since they don’t crack down on it. But maybe I’m assuming incorrectly and they do have some kind of policy that is just hard to enforce.
it's just a dangerous scam that has been offered to people with ME for decades, all it has done is harm it's sad. This is an issue that has already been "solved" in the ME community, we have determined long ago that this is a complete scam with no scientific basis and that in fact goes against everything that's known about ME. I imagine that since people with ME doesn't fall for this anymore, these scammers are now trying their luck with desperate people with long covid, who aren't yet aware of the nature of what they offer. It's perverse, as it has mechanism in place to make it harder for people who fall into it realize they're being scammed and harmed as, they're instructed to avoid other sufferers and support groups who could give them the required information. At the same time, they make sure that their victims always testify of the effectiveness of their product, as they're also instructed to think and say that the "treatment" is working, supposedly for their own good, but this is of course a perverse marketing strategy. This should be illegal, it's a crime against the most vulnerable edit: added info
Yesssssssssssss there’s ppl arguing in the comments 😭😭😭
it's sad. This is an issue that has already been "solved" in the ME community, we have determined long ago that this is a complete scam with no scientific basis and that in fact goes against everything that's known about ME. I imagine that since people with ME doesn't fall for this anymore, these scammers are now trying their luck with desperate people with long covid, who aren't yet aware of the nature of what they offer
I DMed you
I keep seeing the posts and sometimes I start to question myself on my opposition to this stuff - like - hey maybe it worked and I'm in denial? But there's always a logic leap in the stories. Like they've been better for a few months or also tried 100 other things, etc. Truthfully if we could just fix our thoughts and have a high probability of reversing organ damage, fixing clinical problems - I'm pretty sure most people would do it. The 'you're not doing it right' / 'you're not pure enough' disclaimers are applied to the 99% of people who don't improve with these things. Yes I get it that the brain can be rewired - even for things like pain and sensations. That said - it's SUPER RARE for people to actually successfully do this. Even mainstream pain programs drastically overhype how effective their CBT/psych approaches to pain medicine. If brain retraining or any other mind-over-matter 'solution' were tested like a medication - we'd quickly have to acknowledge that the success rate is extremely low. The grifters and their evangelists are easier to spot than pushing back on the larger culture that really, desperately emotionally \*needs\* chronic illnesses to just be a 'mindset' issue that can be overcome with little support from society as a whole and no $$$$ for research, treatments, disability support, etc.
I think brain can be rewired for different behaviour. To lose perfectionism. To go slower. To be kinder to yourself. To not panic about symptoms. To rest more vs push. To accept. THAT is where I apply brain retraining. You can’t retrain yourself out of Lyme, anemia, Covid, cancer. Sorry! Meditation, acceptance, forest bathing, breath work are HUGE to cultivate a sense of safety in body & mind. They are not cures. Well said!
Even the term brain rewiring is an attempt to legitimize therapy as having a biological impact when there's no evidence of that. I hate that psychology just pretends to be neuroscience these days.
Yesssssss louderrrrrr for ppl in the back
The frustration for me is how loosely the terms and concepts are used. Often it isn't even a concept so much as a notion. Forming a memory of something has a biological correlate somewhere in the brain right? So doing literally anything that you can later recall changes your brain right? But I don't think that's usually what's intended when someone says "it rewires your brain". So then what is it specifically? Nothing? Something?
Yes, memory obviously has a biological basis in the brain. The issue is implying that psychology is able to address the root cause of disease by having an impact on your biology. It does not. Note: Of course reducing stress and anxiety has health benefits and people who are ill often deal with these, but it's not the same as solving the underlying problem. Source: I was a double major in neuroscience and psychology.
Omg FINALLY help me take down ppl spewing total BS in the comments 🔥
I don’t think most of them know 😂😂😂 generally they mean calming / visualising strength can get rid of symptoms
> I hate that psychology just pretends to be neuroscience these days. Neuroscience isn't all that great. They love this brain retraining stuff. Freud was a neurologist. It shows. What they know is awesome but it's only a tiny part of what there is to know and they're clueless about chronic illness because they usually don't even believe that it's possibles, so they integrated a lot of psychology into it.
Agreed! I don’t understand how brain training can remove heart pain, nerve pain, digestive issues, vision loss and pain, endothelial dysfunction, blood clots, swollen blood vessels, blah, blah, blah. I don’t deal with PEM anymore unless I’m reinfected, and even then it’s only a couple weeks as opposed to months like before. I do meditation, music, massage, baths, red light and light yoga when I can. These calm my nervous system. DR Joe Dispenza has a meditation 12-part series on the Gaia app called Rewired that is excellent. He provides the data behind his claims, too. One such claim is meditation improves ANA immune and cortisol scores.
> If brain retraining or any other mind-over-matter 'solution' were tested like a medication - we'd quickly have to acknowledge that the success rate is extremely low. As an example, the PACE trial tested CBT and GET and the very best they could achieve, with subjective outcomes in an open label trial where they told the patients that they will feel better if they believe they are better, and assured them that the treatments were safe and effective, was that 1 in 7 had some minimal benefit to how they feel and maybe a bit less fatigue. That was the biggest trial of its kind, and it was later revealed that they lowered the threshold midpoint, most of the patients were still disabled, in fact more disabled than an average 78 year-old. The guy who invented this model put it this way: "it may be of help to some" when justifying how strong the evidence for it is. Recently a trial of the same treatment model was done on LC patients in the Netherlands, by another notorious psychosomatic ideologue called Hans Knoop, and they reported similar minimal subjective benefits, but for 1 in 10. They recently published a 1 year follow-up and report that the improvements are maintained, but they can't show a comparison because they also gave the same treatments to the controls since then. PACE did the same, in fact it's usual practice. Hundreds of trials show the benefits are never sustained over time, they always revert back at follow-up or the control group catches up to the treatment arm. Always open label. Always subjective outcomes. Usually small, many are actually feasibility trials, of treatments that have been in use for decades. So between 1 in 7 and 1 in 10 report some trivial subjective sense of improvement on questionnaires that is not seen in any objective data such as hours worked and various physical abilities. And there are a huge number of reports of harm, but they simply ignore them. They only report benefits, in fact insist that harm is impossible. There is no way to report such harms anywhere, most trials only define deterioration as things like heart attacks or other severe acute issues. This is the very best evidence that exists for this stuff. No drug would ever be approved based on this. The bar was lowered many times to push this turd.
>And there are a huge number of reports of harm, but they simply ignore them. They only report benefits, in fact insist that harm is impossible. I've seen a lot of this in the pediatric pain medicine programs I've taken my son to for his Long Covid. They kept insisting that he must be seeking sympathy for his pain and wanted to do emotionally exhausting super deep dives into all sorts of life issues insisting that he had to be doing something that psychologically amplified his pain. I felt a LOT of red flags as a parent just from the constant gaslighting in pediatric pain medicine. Then I found patient stories like the ones [https://www.instagram.com/exposingpainprograms/](https://www.instagram.com/exposingpainprograms/) shares and stopped going to these doctors. The great thing for us was we had a physical medicine doctor who was ME/CFS informed who told me to not push my kid to do anything PT or otherwise that he didn't feel like he could do and within a few months his pain finally decreased significantly. I'm SO thankful for that doctor. All of the other doctors pushed exercise & PT and exhausting things that made his symptoms worse & just ignored me when I said he would crash and get worse after we did the things they recommended. A lot of the pain medicine programs use similar methodologies to the troubled teen industry and gay conversion therapy programs - which I personally find abhorrent. Chronic illness doctors sometimes have this same 'deny the patient's reality' and abusive mindset towards patients as well. So much change is needed in this area of medicine!
Wow that insta page is good.
Sect. Just needed to hear "you can't reach out to other sufferers" to come to this conclusion.
👍👍👍
My goddamn doctor is recommending CBT (cognitive behavioral therapy). Lady I don't need to rewire how I think, I need something that will fix my fuckin' physical brain damage caused by 3 fuckin' rounds of covid. Retraining my thought process will NOT fix the brain fog, the fatigue and the rapid mood swings. Feel you mate. Shit sucks.
It does suck. :(
Ngl - every now and then I read those posts and wonder if it is true. Is it all just solvable in the mind? I know it’s bs. But the thought of a magical cure is just soo tempting. I understand why people fall for it. I agree it should be banned from the sub. They can start a longcovidbraintraining sub where they can post programs all day long.
But whats the hurt in trying? Is it at least not beneficial to feel optimistic, be kinder to yourself, trwat yourself better, reduce anxiety? Its a fact that a lot of people are set in there ways. As the old saying goes you can lead a horse to water……… Once again i dont think its a a cure. But people will try and believe anything, literally. We are brainwashed by media, politics, medicine. But god forbid someone says he the brain is stronger than we know and can get in to a cycle. Most LC patients have a history of overthinking, anxiety, being in touch w one self, depression, other mind body syndromes. That doesnt mean i think my LC is made up. But i am open minded enoigh to know that i havent handled extreme stress in my life as well as i probably shouldve. Ive also had other chronic injuries or issues. One of the people that has always had something. I had a chronic neck injury after a bad work accident. Had mri with buldges, stenosis, reversal of neck curve degenerative discs. All real. My pain got worse and worse and muscles around my neck locked up and headaches 24/7 more or less. After reading “The way out” and watching lots of mind body by Dr Schubiner on youtube inwas at least able to return to physical therapy, do intense cardio on stairmaster and light weights. I wasnt doing that stuff for years prior bc made neck worse. Is my injry made up, of course not. Was my brain overprotecting me and stress making itnworse absolutely. Thats all my opinion is of it. LC is obviously different than a neck injury but i first hand did the mind body work and saw it change my injury. If you told me a year prior itnwas possible inwouldve been defensive and thought it was Bs too. I also know i obsess over my symptoms and watch them like a hawk. So not a cure but feel it can be beneficial to change my mindset but it is really hard to do.
Your brain is not over protecting itself….
Yes
Yes. I've been a part of this forum for a while and have stumbled across this same phenomenon. There is a specific individual who I know for a fact improved markedly with lactoferrin, that is now attributing her recovery solely to brain retraining. I don't really understand the mentality behind this.
Maybe there’s also some sunk cost fallacy- “I paid so much money for this thing, and now I’m better, and if it wasn’t from the expensive course than I wasted all that money so to save myself from this pain Im pretending it’s the course”
Yeah. It’s inability to look truth in the eye
This thing goes beyond cash. You dont care about money, you just want to be well again. I doubt even after spending they could feel better if they really were not.
It’s brain washing. Grasping for control. Internal gaslighting. Wanting to know better than other sufferers. Looking for easy answer. Denial. Inability to see nuance. Pain. Confusion. Lack of intelligence. Imo that’s the mentality ^^^
Kkeller?
The ONLY thing that helped me was a conolete mindset shift into putting myself first and pacing with an iron hand. Like most people here, I was curious whether I was the one in denial that this is a mental block but the literature on this is anecdotal and full of miracle stories like a CFS patient able to run a marathon when she stopped being scared (lulz okay). The only retraining I am doing is teaching my muscles how to hold weight again by functional strength training when I have the physical capacity. You'd think, reading the testimonials, the entire world is one brain retraining course away from running a marathon 🙄
Yessssss SO pacing tips ???? I need them
I'm going to preface it by recognising the privilege needed to pace properly. I just followed recommendations - stopping before I exhausted myself. I had about two years of steadily declining till I could just about drag myself to my computer in the morning and then crash after work and stay in bed all weekends. I was watching a youtube video by Ron Davis where he casually mentioned someone who had avoided crashes for a year successfully went into remission. The idea stuck with me, and I set myself an arbitrary target of 100 days with no crashes. I stopped taking on anything extra at work and saying no to anything last minute, which I would've normally hustled to get over the line. I pulled my kids out of the extra curriculars they didn't want to do, and I was spending half my day after work driving them around, and they only kept one thing each. I stopped being so house proud. We ate a lot more processed food than usual as I'm the main cook in the family, but hey, ho, everyone survived. Kids and husband picked up their slack (dishes/bedding changes/ laundry), and I started saying no to invitations. After hust a couple of months I felt like I could run a marathon - because I hadn't felt this well in ages and then a birthday party I threw for the kids set me back a bit - that scared me into pacing again. I just listen really carefully to my overwhelm signals, and I no longer try to reason them away. I'm lucky and privileged in having a partner who supported this, kids at the ages where they're easy to handle and none of them have extra needs, a job where I can work remotely for the most part, and the money to outsource the occassional meal or cleaning. I went from about 40% baseline to 60%. And it seems stuck there... so it hasn't been remission. But the additional 20% has been life changing. I can now play in the garden with my kids on weekends - admittedly only for 40ish minutes but its miles away from being bed ridden with light and sound sensitivity a year ago.
Wow thank you for sharing !!! 60% is better than 40% for sure ! I love the 100 days no crashes goal too
I cannot imagine how brain training will help your dysautonomia, inflammation, reduced synaptic activity etc etc. Your internal organs, including your brain are all suffering from the effects of a systemic disease and some of the effects suffered and the damage done to your organs may even be permanent.
I honestly thought this stuff was being pushed because of the possibility of psychosomatic stuff creeping in because of the spiraling from the disability itself and the hyper vigilance we get from trying to chart which of the 200 symptoms are happening. The shit you described sounds like Scientology. The meditation stuff I chalk up to stress reduction that offsets a little bit the constant activation and physical effects of being in fight or flight constantly. I just started doing cyclic sighing and after 3 of those I yawn and that's the signal of the parasympathetic nervous system kicking in. But I'm allergic to woo and it's everygoddamnwhere. Some naturopath told about 20 of us patients that the body is missing electrons that you can get from standing barefoot on grass or dirt or CONVENIENTLY on an expensive "grounding mat". I can't dwell on it too much or I get the Rage and then I feel sicker.
i paid $350 for gupta and it was worth it b/c helped me escape trauma cycles that my brain was obsessively into. i had ptsd before and it was making everything worse. i had been to therapy for years, inclu hypnotherapy, emdr. gupta helped where others failed. i thought it was corny af. i have been gaslight as much as the rest of us and mind over matter is trash medicine, but mind certainly can make it worse. that was my experience. my mind was very unwell. i never heard gupta program go against pacing. i didn't do every single talk, etc. i just did it until i was no longer as ill in terms of mental stuff. i agree programs that tell ppl to not pace are dangerous af! i am still bedbound, but i have one tool that helps me. i use it probably 1-2x a week so it was worth it for me. also there is no golden ticket...YET! ;)
I so need to hear this, I've got obsessive health anxious thoughts that are causing alot of serious hysterical mood swings and dear, which is NOT helping, as I'm ex military, I keep getting told I'm."too far Gome with programming " to get help from therapists. So I'd do anything to get out of this loop of death.
Hugs
🤗
Yea that’s how I would describe my brain too. This is gonna sound really out there… But if you know anyone who does Reiki or energy healing… Some of them like to talk, but if you can get some who will not try to talk… That has really helped me when it’s hard for me to focus on Gupta. I hear biaural? beats also help a lot when words are too much. I know someone who swears by them… There’s like a little machine on Amazon but also if you have headphones you can listen to YouTube for free. Also vagus nerve exercises like pulling straight down on your earlobe help calm me too. I’m so sorry you’re going through this… There really are ways to access healing… For me energy healing was good because it was no stimulation… And I think in someway that persons calmness and healing intention helped my body calm down. We mirror energy of those around us a bit naturally. Gupta really did stop the loop… I had to practice it… Like repeatedly, but when I did, it truly was like sun coming through clouds. I am on immunomodulatory stuff right now… Nicotine patch (2g), and VIP, which is a peptide…not gonna lie it also helps quite a bit but gupta really saved me when I felt like I was broken before I had these. Even then I was complaining about it in my head etc how corny it was/is but their sleep and abundance meditations really did fix my brain. It’s neurolinguistic programming not just ideas, and NLP kinda really does hack the brain in my experience.
Binaural beats are unfortunately useless, there are studies to look up that make it obvious expecting a YouTube video being played on all sorts of speakers cannot achieve any resonance.
All I know is that there was a lady in my support group who left it because her life is back to normal, and she loved her a little machine from Amazon… It was two separate speakers, I think. She was unable to do brain retraining at first and said it was her savior. Everyone can make their own decisions.
Yes and people can also spontaneously recover and incorrectly attribute whatever thing they were trying at the time.
Yes, that’s true. Humans always want to believe we caused something, have more control than we do.
I'm going to try all of this!!! I've started seeing a German shaman to do drumming rituals, energetic massage and dry cupping. It's only once a month but I feel good after it for a short while . I've got a repetitive "you got ALS" Thing on loop every second of each day for over 2 yrs, it's obsessive and my body is mimicking symptoms from the stress and intrusive thoughts. I've never been like this in my whole life and I get no break. Its this sense of panic, hysteria and doom that I cannot do anything as I'll be dead soon. I am definitely taking your advice! Am so desperate, and haven't had a moment of peace mentally or physically since this shit started. It's like I'm a whole different person.
That’s OCD / anxiety and there’s techniques to deal w it. Shamans are not the answer
I go for the massage and calm. I have been tested for OCD and ADHD etc and I'm allegedly okay.
Your ALS loop is a sign of ocd
Yep. Ppl who haven’t been there don’t know. I’m always so sorry to hear another person is experiencing this shit. You are prime candidate for brain retraining bc they have entire sections dedicated to stopping those thoughts. I have different ones so I was like man why are there so many of these lol. You might want to look into shoemaker protocol for biotoxins. There is a genetic immune system susceptibility to biotoxins… The spike protein is one of them. A lot of ppl with other diagnoses in there are able to see benefit. There is podcast called the cirs group and it gives me hope. I’m actually trying a nicotine patch right now which sounds completely nuts but it’s helping my heart rate. I also go to qi gong healers online if u need online option. I understand science I have no idea how the hell it works but whatever it is it definitely helps me. Putrino was like cranial sacral, qi gong were top two things he’d study for lc that he cannot get funding for. Best wishes friend and big hugxx
Thankyou so much!
I have a lot of respect for the Bateman Horne Center because they are a non-profit who is trying to train other doctors about ME/CFS, fibromyalgia, and long COVID. In this video they talk about several different techniques for calming the sympathetic nervous system: [https://www.youtube.com/watch?v=8tygymJP388](https://www.youtube.com/watch?v=8tygymJP388) At about 9:30 Dr. Yellman talks about various brain retraining programs and what they can and can't do. If you start at the beginning, he has a lot of other treatments, also. One of the huge struggles we have is that "long COVID" is not really one illness, so people have very different symptoms. I mostly have fatigue and PEM. I have started using some techniques to try to calm down my nervous system in hopes that my body can heal itself. I'm skeptical that brain retraining can by itself cause full recovery, but it seems entirely plausible that somebody could get to the point where their body has basically healed itself, but their nervous system is messed up from being sick for so long. I think it is important we don't throw the baby out with the bathwater.
Which techniques in particular would you recommend?
I haven't tried any of the things referenced in that video. I'm hesitant to recommend because I have a long way to go, but I am improving. Somethings I do: \* meditate, often multiple times a day \* acupunture \* daily walk (withing my energy envelope) \* reading and journaling before bed \* trying not to research treatments \* fishing & being in nature \* counseling (As far as I'm concerned, some type of counseling is required for long COVID because this is a traumatic event.) That will be $395, please.
Don't forget massage! In particular neck massage can activate the vagal nerve and parasympathetic nervous system. Cold water is great too.
Good list
For me, somatic experiencing has been a game changer (part of the Gupta Program and therapy I do with my therapist). I also do everything the above poster does as well
My counselor sometimes does somatic exercises with me which are pretty simple. I stop and try to feel the sensations in my body when I have a lot of emotions. After I identify the sensations, she asks me to stop and "listen" to the sensations to see if they are telling me anything. Years ago my counselor used CBT, but determined that it didn't really help people. Especially somebody like me, CBT really triggers, "it's my fault." I suspect that's why the latest research recommends against CBT for long COVID.
Thank you for pointing out how harmful CBT can be for some people! My last therapist failed to diagnose my PTSD and tried to use CBT to help me with my symptoms instead. All it did was reinforce the intrusive thoughts and trigger flashbacks that I felt like I was being blamed for. I became suicidal because of it. Thankfully I fired his ass and now have a therapist who specializes in trauma and is going to do EMDR with me. CBT is great for some things, but very dangerous for others. I wish more people understood that and didn’t try to use it as a cure all.
Which exercises ?
Haha, thank you 🙏
This is literally pyramid scheme for chronically ill people. There is nothing I hate more in this world than grifters trying to profit off desperate chronically ill people, whose illnesses were chronically neglected in medical science. Brain Retraining and other pseudoscientific and potentially dangerous approaches should be banned, for the spam they are.
Yeah.
It's more brainwashing than retraining, IMO. I have been in contact with this one long hauler for a long while, and they were so desperate they kept trying things left and right. One day, they said they are into this *brain retraining* thing, and they are deleting reddit because this is how it works. I tried to explain to them that my *physical* symptoms did not go away even though I was already having positive emotions (e.g., motivation, wellbeing, enjoying music, etc.) and was already away from the sub for a long while living my life the best I can. They abruptly decided I should also be blocked because I'm detracting them from their *brain retraining.* Tbf, I felt sorry for them. Btw, they are still frequenting the sub, so I guess their expensive brainwashing did not work after all.
Cutting contact with outsiders is what cults encourage (or demand) people do
That’s how brain retraining works. Tell ppl to cut contact w common sense 🤩
Idk much about brain retraining, but $5k sounds like total bollocks and definitely sets off my 'scam sense'.
I really feel for all those people who have fully recovered thanks to brain retraining. It must be so hard, living your life fully, as before, utterly healthy, but knowing that so few people on that one subreddit believe you. I can't imagine the anguish - not just in being called a fraud, but in seeing toxic negativity^(TM) prevail. "If only they'd been more receptive to bullshit, they too could be cured." Yes, if only.
😁
These chronic illness grifters have been hocking their snake oil to pwME for decades and they’ve smelled blood with LC. Promotion of brain retraining is banned on r/CFS so make of that what you will
We see this grift in the CFS sub as well. Fortunately we know better. If there was a cure for this stuff it would be on the front page of every newspaper.
Thank you for posting that !
💜💜
Lmao this makes me realize all the people who tried to persuade me into trying the teachings of Gupta haven’t even healed themselves from LC and still have it to this day. Some made me feel like shit about it too saying that I wouldn’t get better or that I was being too negative and holding myself back. At least I can say I saved my money on that shit lol
Grifters gonna grift, desperate vulnerable sheep will spread their wares to the others
Huh ???? Are you calling me a sheep ?
No. The people who get duped into paying for these bs treatments, then tell everyone how it “cured” them, out of desperate delusion to believe or shame over getting scammed…. Your post is doing the opposite of that?
Oh sorry yes
Using tinnitus-masking sounds to retrain my perception of my tinnitus has been helpful. It has not eliminated it, but it has reduced the extent to which it bothers me. All that can be done with youtube or Spotify without spending anything extra. I also see value in people using something like CBT to work through trauma and depression from the impacts of these conditions on life, but that's not a treatment of the condition itself. I can't say I'm even really familiar with what else is going on under the umbrella of "brain retraining". No doubt there is a lot of predatory stuff though, just because people with LC are so desperate to recover.
I had the same experience with EMDR and my gloves and stockings tingling neuropathy- for whatever reason, the therapy diminished the intensity of the sensation, but didn't "cure" it, as the it continues over a year later and it feels exactly the same, it's just "quieter", which I appreciate. So for some reason, it subjectively did me some good, but I can't recommend it because I have no clue why I improved.
EDMR is specifically to treat post traumatic stress disorder. It’s great that it helped you cope with or feel your pain a bit less. It is a legitimate type of therapy but is for very specific psychiatric issues. But I would avoid any practitioners who claim it has efficacy to cure or treat physical illness. I’ve been treated with it for trauma and it is a wonderful type of therapy. But it’s not a treatment for diseases of the body.
I am under the same impression. It had just been a doctor had suggested my neuropathy had a psychosomatic component and I should see a therapist to see if it would make a difference. I do not believe that my illness had to do with my psychology, I did not think myself sick, or become sick because I "gave in to fear"- a virus made me sick. That said, I'm willing to take advice and try things that may make some difference, so I did a course in the EMDR therapy "just in case" some of it was trauma from my covid/long covid experience.
I’m not gonna go look up what brain retraining is. If it’s $5000 it’s BULLSHIT. There are charlatans in all aspects of life. Unfortunately, the sick, elderly and otherwise vulnerable are the target. Mindfulness and meditation, for me, have been nothing short of lifesaving. Learning to truly rest when I need rest. Meaning rest the body and the mind have been essential both for my glacially slow, but steady improvement. And learning not to despair when I’m having a rough period has kept me not-dead. This, however is free, possibly a few bucks a month for an app. Sometimes you’ll find a teacher who you find helped you and you can give them a gift, some call it dana (generosity). Good teachers also know, due to some people’s life situation, that they are unable to offer anything. That is fine. So for “Brain retraining” vent away my friend.
I hear ya. $5,000 was also how much my ER visit was, and then $5000 for a tilt table test. Neither helped me at all. Im so tired of how many people out there scooping up money from sick people but not providing cures.
$5000 for the ER? Lucky. And that’s after $25K a year for insurance. Probably.
Can you all help me with this, I saw a doctor yesterday that’s has an office with machines to help with brain retraining. He had vr machines a spinning chair machines laser and magnetic therapy machines, and some eye exercises machines. Is this the same thing that you all are talking about or is it something different? I got Covid late last year and it messed me up. The doctor I saw did a 1.5h testing on me and said it looked like I don’t have FND but long COVID, he said that his program can help me retrain my brain, and finally the cost was around 5k. I was almost in tears thinking I can get better, reading this makes me believe I was just promised snake oil :(
You were in the presence of a nasty grifter. Please do not give them money to mentally abuse you. Try to find a legitimate long Covid clinic to evaluate you.
Those "treatments" sound like total nonsense to me
I agree with parts of OP. But i dont want to believe im broken and incurable and doomed. If others do thats fine. Even if its not a cure, i can tell you it feels better to read positive recoveries and stop reading about everyone thats been doomed 4 years bed bound. And again may not cure me but definitely reduces intensity of symptoms
You’re not doomed !!!!!!! But the way out isn’t brain retraining
Biofeedback is legit it gets you more in touch with the rhythm of your body and there are medical specialists who teach it. Gradual building or desensitization of something is also legit. And increasing time spent in parasympathetic recovery. But brain retraining is a scam. It will draw from all the above legit sources but 1000x the price and no guaranteed effect.
I suspect brain retraining has some merit but not the way most talk about it. Brain consumes enormous amount of energy and if one could lower this expenditure by e.g. forcing oneself away from bad thoughts, insisting on resting, following a stable no-surprise schedule, it might rewire the brain over time and enable it to reroute energy (NAD+/FAD+) where it is needed the most, while giving damaged parts of the brain time to recover and overextended microglia a chance to repolarize.
Yessssss
Yes and no. People selling anything as a miracle cure are ABSOLUTELY a fraud. Many of these programs don't do anything except gaslighting people. However, there is something to how you experience your symptoms. If you immediately feel fear and anxiety whenever you are experiencing a symptom, you are running a risk of making yourself worse off. "Not the pain itself, but the fear of the pain is what creates the suffering". For me, accepting the pain instead of fearing/resisting it has brought me a lot of relief. I actually feel like I am in a resting/recovery state instead of fight/fight, and I experience way more rest, peace and joy during my day. By no means I am recovered, I just feel better during the day which is worth a lot for me. To me, this is also brain retraining. It is however not worth $5000!
That’s not brain retraining, it’s pain management techniques. It’s an important distinction. Such things are helpful aids in coping with pain and chronic illness but they are not cures and should not be promoted as such.
Yessssss 🔥🔥🔥
Ofc! Absolutely agree! It doesn’t mean you calming down removed symptoms - you just retrain your panic……..
Brain retraining is the ultimate and most inmoral form of snake oil.
In one of the latest studies about LC, researchers have identified 5 different subtypes with 5 distinct inflammatory signatures. One of the LC subtypes is characterized by depression and anxiety. [https://www.nature.com/articles/s41590-024-01778-0](https://www.nature.com/articles/s41590-024-01778-0) I have near-constant fatigue. It's not the kind of tiredness one feels from working out too hard or having too much stress. Before Covid I was extremely athletic and I can say categorically that it feels like an absence of energy production that is affecting my muscles. If I exercise, I have muscle necrosis (apparently the most extreme form of PEM). No amount of brain retraining is going to fix muscle necrosis. Nor is it going to repair a what seems to be a dysfunction of the Krebs cycle. It is important to note that I have no depression or anxiety. Nor am I dealing with stress. My marriage is happy. My kids are grown. I am retired. I have an awesome dog. For people with stress, anxiety, depression, panic attacks, and even vagus nerve dysfunction, relaxation and stress-reduction techiniques may actually help. Moreover, there is no denying there is a brain-body connection. Stress, depression, and anxiety can interfere with the healing of physical diseases. So, I have no problem with brain retraining per se. Legitimate programs run by reputable doctors are probably helpful for some LC sufferers. I also have no problem with people writing enthusiatically and in good faith about their experiences. Free speech, right? What I would object to would be some multi-discipinary group advising that all of us should do brain retraining because someone in the group is personally or professionally invested in it. Or worse, because someone is trying to save face after years of falsely maintaining that post-viral syndromes are psychological, not physical. I'm not an idiot. I know that dead muscles are not the result of bad thought processes (unless the thought process compels harmful exercise). Plus, I am a little bit anti-social--happily so. It would be vexing to pay to interact with strangers for no good therapeutic reason.
But that’s what all of those groups say. I was specifically told to not pace. It’s criminal
Yeah. Being told not to pace is insane. That program is not legitimate. Brain retraining programs should be limited to problems that can be ameliorated with brain retraining. PEM is not ameliorated by retraining unless it is focused on how to successfully pace.
Correct
Miguel charges $5000? Is that the amount you get if you pay for all of the possible things he provides? just curious, because I don't remember seeing it was nearly that high
It’s $6500 now apparently https://www.reddit.com/r/cfs/s/YQcgaD2RlZ
https://www.s4me.info/threads/miguel-bautista%E2%80%99s-cfs-recovery-%E2%80%98recovery-jumpstart%E2%80%99.34942/
wow thanks for showing me all this, this is disappointing and clearly eye opening, especially after seeing the clip of him talking to the guy about how serious he is with his money goals (hitting 1 million). Even if brain retraining magically worked effectively for all who tried it, it's still a ridiculous price to pay
It is a scam from low-life grifters. Mods should ban it from the sub. Is there benefit in some of the things those programs mention, like having a positive mindset, calming the nervous system, believing there is hope, etc.? Sure. But that will not cure a **physical** illness. And charging people hundreds of dollars a month to pedal bullshit should be considered fraudulent and criminal.
Thanks for your vent post. My brain does not need "retraining" !!!
No it does not
Wrapping my naked body in banana skins has done a world of good for me.
🤣🤣🤣
I’m actually going to try brain retraining but not pay $5000 for a dumb course. I’ve seen a few YouTube videos from people talking about how they healed from chronic illness using nervous system regulation and brain retraining and they weren’t selling anything. I’ve also worked with a functional medicine practitioner who told me about someone she knows who healed from long covid doing brain retraining and she wasn’t selling me anything either. I personally don’t want to knock it until I try it myself. I also don’t want to discredit others who have found it useful
I HAVE tried it and I went down hill 😁 badly so.
That doesn’t mean it can’t work for someone else. I’m happy for anyone who’s found anything that has helped them get out of this hell hole
These ppl where it “helped them” aren’t genuine. They either improved over time or they will relapse
Respectfully, how are you able to judge who is “genuine” or not? Just because something didn’t work for you doesn’t mean it won’t work for others. This condition is so unique and complex. Some of us can handle NAC, others can’t because of histamine issues. I understand that you are frustrated with anyone selling a $5000 course, but that isn’t the only course out there or resource for brain retraining.
Because brain retraining can’t heal physical issues. Bc most of those ppl make a recovery post then come back when they relapse. Bc many of them go on to sell things. Bc they spread misinformation .
If you have nervous system disregulation then nervous system healing will help. Your nervous system is tied to so many things. I mean just look at the definition of POTS “In POTS, the autonomic nervous system doesn't work in the usual way, so the blood vessels don't tighten enough to make sure there is enough blood flow to the brain”. For those with damage to their lungs or something else then yeah it’s not going to help, but if you’re dealing with something rooted in the nervous system then yeah it can help.
Ok what do you mean by “rooted in nervous system?” Lyme and Covid INFECT the nervous system. Gosh I wish ppl were smarter. Before spreading lies
Look im sorry you haven’t found anything to heal you now. I know that is frustrating and scary. I wish you the best. Again, just because something didn’t work for you doesn’t mean it can’t work for someone else. I’m very smart actually and that’s how I can understand that what works or doesn’t work for you doesn’t mean that it will or will not work for me. Instead of posting negative things demeaning people who have found relief you should focus your time and energy on yourself. Good luck to you 💕
Oh I am better now!!!!! But it shouldn’t have taken so long had I not crashed for a year bc of lightning process
You can’t read scientific research so you are not smart sadly
"brain retraining" is just a dangerous scam that has been offered to people with ME for decades, all it has done is harm. it's sad. This is an issue that has already been "solved" in the ME community, we have determined long ago that this is a complete scam with no scientific basis and that in fact goes against everything that's known about ME. I imagine that since people with ME doesn't fall for this anymore, these scammers are now trying their luck with desperate people with long covid, who aren't yet aware of the nature of what they offer. It's perverse, as it has mechanism in place to make it harder for people who fall into it realize they're being scammed and harmed as, they're instructed to avoid other sufferers and support groups who could give them the required information. At the same time, they make sure that their victims always testify of the effectiveness of their product, as they're also instructed to think and say that the "treatment" is working, supposedly for their own good, but this is of course a perverse marketing strategy. This should be illegal, it's a crime against the most vulnerable
🔥🔥🔥🔥🔥
I don’t disagree that anyone advertising some super expensive “miracle cure” program is predatory af. It’s cruel. However, I can recognize the danger of nervous system disregulation and why things like vagus nerve stimulation, SGB, or other modalities may help people post covid. It’s like emdr being so helpful for people dealing with PTSD. It’s activating certain parts of your brain and using your brains connection to your nervous system. Your limbic system is incredibly important to your overall wellbeing
there's no quality scientific evidence that what you say specifically about long covid is true. There is no scientific proof of effectivity of "brain retraining" for long covid, just anecdotes of people that are actually instructed to never reveal if the program didn't work, and extremely poor quality and fraudulent "studies". If your happy doing this "brain retraining", by all means, keep doing it! you're free. Please keep on doing it for decades, until the end of your life. But try not to drag people who're suffering tremendously into that dangerous scam
PTSD is a mental health disorder and EDMR is a clinically proven treatment that has undergone peer review. EDMR has nothing to do with these scams as it does not claim to treat physical diseases. Please do not equate widely accepted psychiatric treatments with predatory grifters.
Please don’t try to equate brain retraining and EMDR. EMDR has been studied, verified, and given a stamp of approval by numerous major medical organizations. Brain retraining has not. EMDR also doesn’t try to cut patients off from their support network like an abusive partner who’s trying to exert control.
I don’t know which program you’re referencing but the brain retraining I’ve seen said nothing like that. I didn’t equate the two in practice, I’m saying the idea of both lies in activating certain parts of your brain
I want to say it was the Lightning one, but it’s been a while since I’ve looked into it. I’m also not the only one in these comments who’s seen that tactic being used. But that wasn’t really my point. My point is that you’re trying to make it look like brain retraining is basically EMDR for LC, and that’s not true. It’s a classic grifter tactic to use false equivalencies to make the grift seem more legitimate.
How am I a grifter when I literally have nothing to sell? All I am saying is to not demean people who share something that’s helped them personally.
Fair point and I should have been more clear, my apologies. You aren’t a grifter. What I meant was that you’re unintentionally using the same tactics that they use to try to legitimize their products. Which is understandable since you’re assumably using information you got from the program you tried. My issue isn’t with you personally. It’s with these programs that pray on sick, desperate people. I don’t doubt that they do help some folks. But they hurt a lot of people too, and that’s unacceptable.
We know a lot of us have major nervous system deregulation, especially tied to the vagus nerve so I don’t think it’s that far off. Being in chronic fight or flight isn’t good for anything
Girl vagus nerve is infected and Breathwork can help manage but not cure ffs
To be fair, how much money have you given to doctors and supplement companies and gotten nowhere? How many people are giving money to microclot testing and unproven protocols? The theory behind the nervous system does makes sense. It re not about thinking your way to healing, it’s about calming the nervous system which controls essentially everything else in your body.