Utsikt
Senior Member (Voting Rights)
The current trend seems to be «the symptoms are real and they are caused by Neuroscienceᵀᵐ».
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
- Thread starter RaviHVJ
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JellyBabyKid
Senior Member (Voting Rights)
This thread has been fascinating and I appreciate the time and effort everyone has gone to to explain their point of view.
Can I ask a couple of really basic clarifying questions?
As I understand it, where pain persists and is not structural, then the mind-body approach says that this is a faulty signal in the brain (the "alarm system") and brain retraining can calm things down, as it teaches the brain that the signal is a misfire as the causative issue has resolved. MBCT does similar in that suggests it both reduces pain or at least allows you to cope with it better, ditto depression.
However, this approach seems to have expanded (much like CBT) to other areas, as I understand it, so that any ongoing symptoms after an acute infection or resolved precipitating event are considered to be mind-body/classical conditioning and can be reversed by brain training, as no causative/sustaining event (e.g. viral persistence) has been found.
However, ulcers, which were considered to be stress have now been shown to have a causative agent and this can now be treated with medication, likewise MS.
Listening to Howard Schubiner talk about ME and LC he says that this is the ongoing mind-body, which is classical conditioning, and is creating symptoms long after the acute event.
I know correlation is not causation and this is a really simple question, asked out of genuine curiosity, but doesn't this suggest that we haven't found the right test for the cause yet?
Thank you again to everyone who posted papers and links, I have found it helpful to go back to basics to understand "from the ground up".
Can I ask a couple of really basic clarifying questions?
As I understand it, where pain persists and is not structural, then the mind-body approach says that this is a faulty signal in the brain (the "alarm system") and brain retraining can calm things down, as it teaches the brain that the signal is a misfire as the causative issue has resolved. MBCT does similar in that suggests it both reduces pain or at least allows you to cope with it better, ditto depression.
However, this approach seems to have expanded (much like CBT) to other areas, as I understand it, so that any ongoing symptoms after an acute infection or resolved precipitating event are considered to be mind-body/classical conditioning and can be reversed by brain training, as no causative/sustaining event (e.g. viral persistence) has been found.
However, ulcers, which were considered to be stress have now been shown to have a causative agent and this can now be treated with medication, likewise MS.
Listening to Howard Schubiner talk about ME and LC he says that this is the ongoing mind-body, which is classical conditioning, and is creating symptoms long after the acute event.
I know correlation is not causation and this is a really simple question, asked out of genuine curiosity, but doesn't this suggest that we haven't found the right test for the cause yet?
Thank you again to everyone who posted papers and links, I have found it helpful to go back to basics to understand "from the ground up".
Utsikt
Senior Member (Voting Rights)
Yes, that’s one of their explanations, but I don’t think it has been proven.
I suspect «this» means the lack of biological explanations for ME/CFS? If so, yes. The mind body supporters often assume perfect knowledge in the sense that we currently know everything there ever is to know about our biology. Which is obviously false.
It’s also why for FND, they have started using positive signs for diagnosing it, instead of actually ruling out other causes. Which is just as illogical as it sounds.
JellyBabyKid
Senior Member (Voting Rights)
That's what I thought he meant. We haven't found evidence, therefore there isn't any. But if they are only looking using standard tests then they won't find any evidence, but that isn't proof it doesn't exist
Utsikt
Senior Member (Voting Rights)
Many times they don’t even look. Their divine insight enables them to just know that nothing is wrong except for their pet explanation.
The problem starts with the medics just ruling out a few bad thing, but not testing anything related to ME/CFS, concluding nothing wrong, concluding it must be psychological.
Psychologists concluding now the patients are ours.
That's 3 times concluding without evidence and messing up our lives in a vicious circle.
JellyBabyKid
Senior Member (Voting Rights)
Sorry, foggy brain! I meant that ongoing symptoms of ME or LC post the acute infection or precipitating event are defined as mind-body symptoms because they are continuing after the acute infection has resolved. But if they are ongoing symptoms then the infection has not resolved, surely?
Also how is it that ulcers and epileptic seizures were mind-body presentations, until a cause was found, and now ME and LC are an evolution of / replacement mind-body symptoms, because they are persisting past the point of acute infection. The logical leap they are making doesn't make sense to me. If x is organic then isn't it more likely y is, but we haven't found the cause. Not x turned out to be organic so y must be a fault in the wiring as these symptoms have to be expressed somehow? This doesn't make sense to me and I am really struggling to understand it. I am clearly missing something or some part of the argument?
There is a positive, rule in sign for FND? Which is what?
Utsikt
Senior Member (Voting Rights)
No worries! Ongoing symptoms does not have to be caused by an ongoing infection. The viral persistence hypothesis is popular online, but I don’t think it has gained much traction here.
You’re not missing their argument. They have no argument. They literally say «it must be this because I think it is this», and interpret everything as supporting their opinion without entertaining other possible interpretations, unless it doesn’t support their opinion - at which point they just ignore it. Or they just lie and say that the evidence supports their opinion when it disproves it.
They use a circular argument. If you have FND symptoms (which are any symptoms, really), you have FND. And the fact that you have FND proves that your symptoms are FND symptoms.
It isn’t intended to make any sense.
JellyBabyKid
Senior Member (Voting Rights)
True. But at which point does it cross the threshold from real, organic illness to mind-body symptoms?
I am trying very hard not to be facetious, but am failing, I'm afraid.
Oh. Really? I was really hoping I had missed some vital piece of the puzzle.
The chronic pain explanation makes some sense, and I say that as someone who lives with chronic pain and has been to lectures by leading scientific minds on it, attended pain clinics and tried a wide variety of solutions, so I am in the words of Mulder, "wiling to believe", but I am struggling to understand the interferential leap to "my brain is producing "ghost" chronic illness symptoms". The explanation that if you have symptoms in multiple systems and organs it must be mind-body doesn't work because how do you explain HIV, various cancers, Lupus etc, etc, which have multiple symptoms and an organic cause? X is organic but Y can't possible be because it doesn't sound likely?
Huh? Confused.
Well, my head hurts now.
Thank you for engaging in this discussion and explaining it further, I appreciate the spoons used.
Utsikt
Senior Member (Voting Rights)
It’s always organic because our brain is organic. But the mind-body folks believe that the brain can cause all kinds of symptoms and illnesses, including ME/CFS. They say this based on very flawed understandings of neuroscience. Although some of them still believe that the mind is separate from the body, but that’s just because some used to think of the mind as what the soul is in religion.
ME/CFS is probably caused by some other biological processes than viral persistence, but not the kind that the mind-body folks talk about.
No, there really isn’t more to it than that.
On the assumption that brain retraining is considered appropriate treatment because ME/CFS is considered by its proponents to be psychogenic - I went looking for the counter argument - that it is not psychogenic. I found this thread. I have not read the paper in full but thought this would be a useful prompt for interested forum visitors & members to relook at it. EDITED clarification that the paper does not make the case for MECFS not being psychogenic per se but is more against the assumption of psychogenic causes.
The ME Inquiry Report
Senior Member (Voting Rights)
I've made a new thread about the BHC recommending brain retraining in their new clinical guide.
Link: Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid
Link: Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid
Merged thread
How Marilyn Beat 30 Years of CFS: Now Feeling Superb at 70! — REBECCA TOLIN | MIND-BODY & LIFE COACHING
Marilyn Lemmon suffered with ME/CFS for 30 years before making a full recovery through mind-body healing. She’s now hiking and skiing at 70!
www.rebeccatolin.com
Not a recommendation!!
How Marilyn Beat 30 Years of CFS: Now Feeling Superb at 70! — REBECCA TOLIN | MIND-BODY & LIFE COACHING
Marilyn Lemmon suffered with ME/CFS for 30 years before making a full recovery through mind-body healing. She’s now hiking and skiing at 70!
www.rebeccatolin.com
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InitialConditions
Senior Member (Voting Rights)
Rebecca Tolin is one of the more prominent YouTube recovery / brain retraining people.
Friendswithme
Established Member (Voting Rights)
This post and some following posts have been moved or copied from;
Brain retraining is not about tolerating milder intrusive symptoms.
It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament). The techniques acknowledge your symptoms are real but teaches you how to dampen down the brain's sense of being under threat so they stop. The symptoms go, you aren't ignoring anything or tolerating anything.
It's not so much about neurotransmitters as about calming down an overactive primitive alarm system.
Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid
I think that brain retraining could result (however briefly) in an increased sense of personal control over the illness. Perhaps dopamine is released or endorphins or some other neurotransmitters.I just wanted to correct some inaccuracies or misunderstandings I've spotted in this thread.
Brain retraining is not about tolerating milder intrusive symptoms.
It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament). The techniques acknowledge your symptoms are real but teaches you how to dampen down the brain's sense of being under threat so they stop. The symptoms go, you aren't ignoring anything or tolerating anything.
It's not so much about neurotransmitters as about calming down an overactive primitive alarm system.
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Friendswithme
Established Member (Voting Rights)
I respect your right to email them but there are a couple of inaccuracies here that I felt important to address.
'Instead, they suggest the brain is misinterpreting harmless bodily signals as harmful.' This is not quite right. It's not that there are harmless signals that people are making a fuss about when they shouldn't, it's that there are signals but the brain is generating them as a warning system. So we can teach the brain to calm them down as there is no real physical threat. You get taught to watch for symptoms that might jump around, which can indicate there is nothing structurally broken, to then teach your brain it is safe and doesn't need to keep sending out signals indicating harm. Weird but true. It's why some people make such quick recoveries after years of being ill.
'Surely the BHC is aware that this assumption is false?' I know its a big leap to accept there might be nothing physically wrong with your body but there isn't actually any replicated evidence that has found anything wrong in M.E so it's not a false assumption. Real symptoms, yes, but no actual damage found. You will always get small studies showing issues just because the symptoms are real and have an impact on test results but nothing has been found as yet that demonstrates causality.
That sounds like what Grigor said. He said the idea is that the brain is misinterpreting the signals, not "people".