To play devil's advocate, the same can be said about all the nonsensical biomedical interventions and research we see. Even when things are clearly nonsense there is little to no critique. Human interactions and societal settings can be complicated.
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
- Thread starter RaviHVJ
- Start date
Because fundamentally people are really passionate about brain retraining, want to help people recover (often having used it themselves) and don't feel a need to compete in that way. It's that simple (in my view, anyway). And different programmes do suit different people so there is no real need to critique others. There's respect for the fact different offerings all have something to give. I have my personal views about one or two people working who I don't think are doing the work in the best way (their claims are too big, their work doesn't give enough of the psychoeducation I think is vital) but I don't have any influence over them and they're still helping people. I have bigger fish to fry, basically (although again, I don't sell courses or coaching)
Well if it was that simple, you'd all be well.
Please. This misses the teaching brain retraining offers, about the nature of how the brain can generate symptoms.
Research is possible, it just seems very complex to get right. And even then, ok great, some of you have talked about how the research could be done well (thank you, appreciate you giving it thought). Ok then what? Who can wave a magic wand and get it done? Lots of people who could do it are caught up with other grants/trials or their own agenda and politics. I think it will happen, I think people will try as time goes on but it's not that straightforward.
There ARE clear explanations of it. In several places:
The TMS wiki
Unlearn your Pain
The Way Out
Dan Buglio YT
Raelan covers basic explanations
Doc Tovah
They Can't Find Anything Wrong (book)
Flippin Pain talks
Free 6 weeks use of Curable with codes offered in various places
Dave Clarke
Alan Gordon (he does lots of breaking it down on Instagram)
I could go on and on, these are the bigger accounts with many more coming up behind them. The accounts on different social media are currently exploding, I see more each week and some are getting up to hundreds of thousands of followers.
There is tons of free content trying to break it down, I get you need to know where they are but any of you could approach anyone talking brain retraining and say 'where can I go to find more for free' and they would point the way
100% NO. You can't make things up about people I know personally. These were people who had complete control over how much they did and when. Brain retraining doesn't typically push like that. It's internal change long before there is any external pushing boundaries.
Brain retraining also does not tell people 'not to have thoughts.' It does ask us to change our language as a way of inducing safety in the brain, but you don't even have to use that part of things if you don't want to.
It's not crashing from over-exertion, what I saw was genuine bits of recovery, the person not feeling able to cope and stopping it.
Economics would suggest that there's a lack of supply, relative to demand. No need to aggressively differentiate if you have got all the business you can handle. The extremely high prices relative to the inputs suggest that too. Maybe there's a limited pool of people willing to nail their reputation to the brain retraining cause contributing to a restricted supply?
In that environment, there's no business case for the brain training proponents to do good quality research that runs the risk of showing that the interventions don't work.
I understand why you've posted all of this but these groups aren't full of people deluding themselves. They're people who have been ill for years and are back hiking/travelling/running marathons. Lasting, meaningful change. It's very obvious how ill they were and how well they are now. You can see it in the photographs. Multiple photos. And people come back and give updates a year on/two years on/five years on to say 'I'm still well.' I do understand why you want to make it make sense in your mind and undermine this narrative. I know it's a really big leap to think people could actually get better from physical symptoms using something like brain retraining to the point of actually being well again. But it's true and it's happening in thousands of people. It's real and I want to get that through to you in the hope you could maybe get better too. Making that leap and realising our emotions and our brains really can lead to physical symptoms and get rid of them is huge but it's a real thing.
The second point, I'm sorry, I hear your explanation and I still have to say as someone who is around a lot of recovered people, that is the reality. You might do things differently one day. You might not understand their position. But it exists and its the majority position. I see it all the time. You can judge it (although maybe you don't have the right to if you haven't been through it) but a lot of fear exists. Lots of people can't face sharing publicly and never will. It's a fact. It is very frustrating but nothing I can do about it.
I've also talked to people who have shared their story, got a mouthful of abuse in different spaces and stopped. They've said it's not worth their peace. Some get really upset about it, it's not easy putting yourself out there. And some have found a way to keep going, others have just disappeared.
I'm trying my best to answer all your comments but please understand I'm one person and there are lots of you. I'm answering in good faith, I'm trying to keep up but I can't. I will come back but I'd really appreciate you all dropping the sneering. There is a real undercurrent of it here.
If you don't want to talk to me you can just ignore this thread. No need to try to be clever at my expense, just spend your precious energy on other things. If the sneering carries on, I'll leave.
If you don't want to talk to me you can just ignore this thread. No need to try to be clever at my expense, just spend your precious energy on other things. If the sneering carries on, I'll leave.
josepdelafuente
Senior Member (Voting Rights)
There is a problem in that there is a trap set up whereby people with ME such as myself and many others here (wrongly) feel like we have to claim that we have no fear of anything.
Or we (without realizing it) get maneuvered in to a position where we feel we have to refute the merest suggestions that we might be scared of exercise.
This is a problem because:
fear of something dangerous is the correct, rational response.
people are scared of putting their hands on a burning hob, because they know that they will get burned, this will both be painful in the moment, and cause long term damage.
The experience of many people with ME suggests that exercise can both be painful and difficult in the moment and cause long term damage for people with ME.
Fear, or if not fear then aversion, could therefore in many cases be the rational and correct response.
However I would argue that that fear is not the cause of the pain, difficulty, or long term damage, just as when we put our hand on the burning hob, it is not our fear of getting burnt that causes the pain, or long term damage.
I for one have not sworn blind that fear doesn't affect anything in my life. I don't think anyone else with ME on this thread has made a statement to that effect either. Of course fear is a part of everyone's life.
The problem is your (or the theory's) assertion that fear is somehow the cause of the pain, difficulty and long-term damage, rather than the result of the pain, difficulty and long-term damage.
Yes we are very set on objective evidence, to me personally, it's completely bizarre that you seem to think this is a problem! I honestly don't know how to respond to that. By definition, anything we are "missing out" on, because it is not supported by objective evidence, is (speaking for myself and I imagine many other people here), something we have made an informed decision to "miss out" on, precisely because it is not supported by objective evidence.
It's fantastic for you that you found something that helped you recover. From your limited description, the illness you had sounds quite different to the ME that many of us here would recognize.
The problem with your claims that brain training has helped people you know personally, is that there is no way to know for certain that the brain training is what helped that person. There are simply too many variables, and the effects of chance, to ascribe cause and correlation with certainty. You might feel - Person X was ill, Person X did brain training, then Person X recovered, and that seems like very strong evidence that brain training caused the recovery, but there is no way to know that for sure. You can't clone Person X before they did the brain training, and have the clone not do it, but do everything exactly the same, and compare.
You might think that is being overly strict / detail-oriented / obsessive about the conditions in order to prove causality, but that is the whole point.
It's unfortunate that you feel there is a "general sneeriness".
Undoubtedly, many of us here, including myself, have a very strong dislike for the ideas you are proposing and the claims you are making, and therefore we are robustly challenging them.
As far as I have read, you have repeatedly implored us to just believe that what you are saying is true - that brain training has helped many people because you just know it has.
We are saying 'prove it, we don't think you can prove it.'
You are responding by saying 'why are you so obsessed with me proving it, I don't have to prove it, it's so obvious that it's helped people'.
Can you see the problem?
Hoopoe
Senior Member (Voting Rights)
@UkPoster do you agree that your claim could be summed up with "Symptoms will improve if people change their expectations from expecting symptoms to not expecting anything negative"?
There are many people who discover that they have reached a point where they can do activities that were previously intolerable and who benefit from changing their attitude towards these activities. That doesn't mean that the change in attitude caused the improvement.
I think it is perfectly consistent with a normal process of recovery. We build a mental model of our illness, capabilities and limits to make sensible and realistic choices in daily life. The model allows us to make accurate predictions. We might call this illness identity. It's normal that once the illness changes the illness identity also changes. Once people can do more, they update their mental model of what they can do, what will happen, etc.
I say this as someone who has gone from struggling to leave the house for 30 minutes after decades of crippling fatigue to being able to drive and do sports and have a social life. I have experienced the progressive recovery accompanied by changes in thinking that you appear to be claiming is evidence supporting your position but I don't agree with that interpretation.
The brain retraining proponents seem to be confused about the direction of causality between illness and illness-related thoughts.
A patient with diabetes who is insulin-dependent, in order to manage it properly, needs to accept that they have diabetes and that it's important to control their blood sugar, allocate attention to this task, and possess in-depth knowledge of their condition. Since diabetes is adequately understood by society, the intense preoccupation with blood sugar levels is seen as responsible and sensible behaviour. In other illnesses, that society doesn't understand well, the illness-associated thoughts and behaviours intended to make the situation more managable are often suspected of being maladaptive and causing the illness. The degree of suspicion is often unreasonable.
We also had a large clinical trial, called the PACE trial, that was based on the idea that negative expectations were somehow keeping ME/CFS patients sick. It wasn't able to convincingly show a reduction in disability.
There are many people who discover that they have reached a point where they can do activities that were previously intolerable and who benefit from changing their attitude towards these activities. That doesn't mean that the change in attitude caused the improvement.
I think it is perfectly consistent with a normal process of recovery. We build a mental model of our illness, capabilities and limits to make sensible and realistic choices in daily life. The model allows us to make accurate predictions. We might call this illness identity. It's normal that once the illness changes the illness identity also changes. Once people can do more, they update their mental model of what they can do, what will happen, etc.
I say this as someone who has gone from struggling to leave the house for 30 minutes after decades of crippling fatigue to being able to drive and do sports and have a social life. I have experienced the progressive recovery accompanied by changes in thinking that you appear to be claiming is evidence supporting your position but I don't agree with that interpretation.
The brain retraining proponents seem to be confused about the direction of causality between illness and illness-related thoughts.
A patient with diabetes who is insulin-dependent, in order to manage it properly, needs to accept that they have diabetes and that it's important to control their blood sugar, allocate attention to this task, and possess in-depth knowledge of their condition. Since diabetes is adequately understood by society, the intense preoccupation with blood sugar levels is seen as responsible and sensible behaviour. In other illnesses, that society doesn't understand well, the illness-associated thoughts and behaviours intended to make the situation more managable are often suspected of being maladaptive and causing the illness. The degree of suspicion is often unreasonable.
We also had a large clinical trial, called the PACE trial, that was based on the idea that negative expectations were somehow keeping ME/CFS patients sick. It wasn't able to convincingly show a reduction in disability.
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Hmm.
The American Chiropractic Association tells me that just in the USA alone there are over 75,000 chiropractors, 35 million people receive care from chiropractors, and 3 out of 4 people who see a chiropractor describe chiropractic care as 'very effective'. The capacity of people to convince themselves that something helps when there is no good evidence that it actually does is truly remarkable.
'thousands of recovery anecdotes' is piffling in comparison. It's cottage industry level, not even that.
'Some people say something helps' is not convincing, when 200 million people use homeopathy regularly (ref. Homeopathy Research Institute).
Jonathan Edwards
Senior Member (Voting Rights)
Neat figures. It reminds just how much people want to believe that treatments work and that reports of treatments working are true. It may be clinical science 101 but it is always worth remembering.
josepdelafuente
Senior Member (Voting Rights)
@UkPoster I wonder if some of what you perceive as "general sneeriness" might be a result of the following:
Many of us are here are interested in evidence, proof, and the very high and difficult to achieve standards necessary to definitely prove cause and effect, efficacy of a proposed treatment. We are pretty uncompromising about that.
Much of what you've said seems to suggest that you think this is somehow a flaw in our characters, or a kind of Achilles' Heel that we could overcome, if we just made different choices (e.g choosing to believe that brain training works).
Speaking for myself, I definitely find the implication that my having very high standards for proving causality is somehow a character flaw quite offensive!
If that manifests as a "general sneeriness" then so be it.
Many of us are here are interested in evidence, proof, and the very high and difficult to achieve standards necessary to definitely prove cause and effect, efficacy of a proposed treatment. We are pretty uncompromising about that.
Much of what you've said seems to suggest that you think this is somehow a flaw in our characters, or a kind of Achilles' Heel that we could overcome, if we just made different choices (e.g choosing to believe that brain training works).
Speaking for myself, I definitely find the implication that my having very high standards for proving causality is somehow a character flaw quite offensive!
If that manifests as a "general sneeriness" then so be it.
Jonathan Edwards
Senior Member (Voting Rights)
Actually, the standards members want to see don't need to be that high. Just basic avoidance of bias obvious to any one who is not blinded by belief. As things are we have no adequately controlled evidence at all. A simple manual explaining how the method works and how it relates to neuroscience (which it doesn't) would be a start, but as far as I know there is nothing.
I think you must have missed my post upthread with the list of harms associated with brain retraining? Here's the link. You didn't engage with the list. I am concerned about those types of harm, you can call my concern 'fear' if you like. No one here has claimed that they don't have fears.
You may not be trying to harm, but there is potential for serious harm from the treatments you repeatedly recommend and promote. The potential for benefit is unevidenced.
A big part of the reason for the forum existing is to be a source of reliable information so that people with ME/CFS can make good decisions. Evidence and logic is part of reliable information. I know a number of patient charities have banned people talking about brain retraining, because of the harm, because of the discord it causes. The forum has not banned these discussions, but it is important that we do not let misinformation stand uncontested.
You are making an inference here and it's totally wrong. I don't think anything of the sort about it being a flaw in your characters.Much of what you've said seems to suggest that you think this is somehow a flaw in our characters, or a kind of Achilles' Heel that we could overcome, if we just made different choices (e.g choosing to believe that brain training works).
Speaking for myself, I definitely find the implication that my having very high standards for proving causality is somehow a character flaw quite offensive!
If that manifests as a "general sneeriness" then so be it.
You have every right to have high standards, but I think you are too black and white about needing perfect evidence in an imperfect world. I think you are disregarding many of the good things brain retraining may offer the M.E community because of needing such perfect research and evidence. People with experience of full cures from brain retraining are trying to say to you that they might have things you could learn from them (not because there's anything wrong with you or any lack of intelligence, it's just different life experience) and you are putting your fingers in your ears and going 'we won't listen.'
My experience of brain retraining was a holistic experience where I saw my symptoms go AND my life improved in many other areas. The changes run deep.
Liie
Senior Member (Voting Rights)
I've actually thought about it, more than once. Not because I believe in it, but out of desperation.
But every time I have looked at it more closely I am put off it. Because all the brain-train merchants seem to be just like you: They don't seem to understand ME/CFS at all. Their descriptions of the condition don't match anything I've experienced. And I've really made an attempt to honestly understand my feelings and mental state and whether that could affect my condition.
And additionally they don't seem honest. They have their "recovery" video channels which are run by brain-train merchants, filled with guests who are also brain-train merchants. They engage in empty bio-babble and misrepresent how much science that support their treatments. They have web sites full of "recovery stories" that praise the program in vague positive terms without any details. If you want learn details about what the programs actually contain you have to look at sites such as https://lp-fortellinger.no/en/lp-stories/, which gives a much more genuine impression.
This makes me think that the brain-train crowd has all the hallmarks of alternative medicine quackery gift. There are endless such treatments that I could waste the entire rest of my life at but there is no point in that, and that it not how I want to live.
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josepdelafuente
Senior Member (Voting Rights)
I would argue that I'm not looking for perfect evidence. I'm looking for good enough evidence. I'm yet to see any evidence for the efficacy of brain training that's good enough.
It seems like we probably have different standards for what is good enough evidence.
Also - just to note - correct me if I'm wrong but from what you've written - you're making an assumption that I've never tried brain training.
I'm not willing to discuss here whether I have or haven't, but I think it's worth noting that you seem to think I've never tried it, and aren't considering the possibility that I have tried it and it didn't work.
Everyone I know who sees a chiropractor loves it. From my perspective, I can't be far enough away from someone wanting to "crack" my back or twist my neck or whatever.
dratalanta
Senior Member (Voting Rights)
I will leave this Groundhog Day discussion of brain retraining to others who can respond more effectively than I.
I want to respond to the throwaway claim that women in abusive relationships remain in them because they are afraid of change. This is a repugnant error which causes huge harm.
Those in abusive relationships rightly assess that any attempt to escape their abuser may lead to terrible repercussions for themselves and their children. Leaving is the most dangerous moment in an abusive relationship and can trigger an abuser - even one who was not previously violent - to move from controlling to murderous.
This needs to be universally understood. The misbelief causes people to lay responsibility for remaining in abusive relationships with the victim, and to believe that assistance in leaving such a relationship means telling the abuse survivor that she needs to change.
Assistance in leaving such a relationship is not telling the victim that she and her children will be safe.
It is actually ensuring that they will be. This means ensuring she has access to expertise and support to help her get her devices cleaned of spyware, her finances separated, her children’s safety legally secured, and providing a safe place for mother and children to go where they will have protection if the abuser attempts to follow them.
Leaving an abuser is a complex process which requires actual tangible support, not patronising maxims. You are not irrational for fearing to leave an abuser, and support is available for you to do it safely.
Information for anyone in this situation is here: https://www.nationaldahelpline.org.uk/i-am-planning-to-leave-my-abuser/
I want to respond to the throwaway claim that women in abusive relationships remain in them because they are afraid of change. This is a repugnant error which causes huge harm.
Those in abusive relationships rightly assess that any attempt to escape their abuser may lead to terrible repercussions for themselves and their children. Leaving is the most dangerous moment in an abusive relationship and can trigger an abuser - even one who was not previously violent - to move from controlling to murderous.
This needs to be universally understood. The misbelief causes people to lay responsibility for remaining in abusive relationships with the victim, and to believe that assistance in leaving such a relationship means telling the abuse survivor that she needs to change.
Assistance in leaving such a relationship is not telling the victim that she and her children will be safe.
It is actually ensuring that they will be. This means ensuring she has access to expertise and support to help her get her devices cleaned of spyware, her finances separated, her children’s safety legally secured, and providing a safe place for mother and children to go where they will have protection if the abuser attempts to follow them.
Leaving an abuser is a complex process which requires actual tangible support, not patronising maxims. You are not irrational for fearing to leave an abuser, and support is available for you to do it safely.
Information for anyone in this situation is here: https://www.nationaldahelpline.org.uk/i-am-planning-to-leave-my-abuser/